Blog Archive

Archived posts for 2013

Exciting APF projects for 2014

Tuesday - December 31, 2013 @ 10:30:00

May each of you be Blessed with a Healthy New Year.  The APF will continue to be available to you and your families.  We will be implementing and help facilitate exciting new projects in the coming year to include:

~ Print Five new brochures
~ Family education project
~ Expand and update APF website
~ Post Knowledgeable doctors on the APF website
~ Facilitate Eight research projects
~ Host a Series of Patient support meetings around the county
 (first meeting is January 31, 2014)
~ Expand porphyria clinics around the country
~ Enlarge Protect the Future program to train future experts
~ Host physicians on our five Facebook groups
~ Host primary care physician training program
~ And much, much more

Watch for news of each additional project starting with details on our first patient education meeting. 

"Remember..Research is the key to your cure!"

Happy 2014!

New exciting Information on Porphyria & how you can help!

Friday - December 27, 2013 @ 15:36:34

Join the Registry


To join the Contact Registry, click here to open a page that lists all of the rare disease consortia. Scroll down the page until you come to the Porphyria Consortium and click on your type of porphyria. You will then be asked to complete a simple form including information about the date of your diagnosis, if you know it. If you have copies of your initial diagnostic lab results, you may want to have them handy when you go to the registry website. 
Porphyria experts have created this National Porphyria Registrya type of partnership between doctors and patients as a way for those with porphyria to share information about their health and treatment so physicians can learn from their experience and use that knowledge to enhance diagnosis, treatment and eventually find a cure for porphyria.
It is the best means to prove that there are enough porphyria patients who want improved health care. If we don't speak up, we will be left behind when research funding is given. We DO NOT HAVE ENOUGH PEOPLE ON THE REGISTRY. Please join the registry.
Joining the Porphyria Registry is anonymous and free of charge. All data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.
The registry is not linked to APF membership, but we hope you will join the American Porphyria Foundation too! So please consider joining the Contact Registry, and thank you for continuing to be a member of the APF.
Doctors who study rare diseases see a relatively small number of sufferers over many years of practice. This Registry will give a big boost to medical and scientific understanding of porphyria by bringing together information from patients all over the country.
If you need help enrolling in the registry contact our office toll free at

"Remember..Research is the key to your cure!"

Liver Foundation Facts

Wednesday - December 25, 2013 @ 10:00:03

This is from the Liver Foundation Fact: 

Liver Fact: The liver is a storage site for a variety of substances. It houses supplies of glycogen as well as numerous vitamins like A, D, K, and B12- to be used months and sometimes years later!


The liver is the largest solid organ in our body. Its about 8 inches (20 cm) wide, 6.5 inches (17 cm) long and 4.5 inches (12 cm) thick and weighs approximately 3.5 pounds (1.6 kilograms).
Youll find your liver mostly under your ribs in the upper right part of your abdomen, just below your diaphragm.
Liver Facts
The liver has two large lobes; a large right lobe and a smaller left lobe. 
The liver has various functions:
  • It makes and secretes bile to help your body absorb fats and fat-soluble vitamins (A, D, E and K)
  • It metabolizes and stores carbohydrates, fats, sugars, vitamins (and other nutrients obtained from the foods we eat) for energy and brain function.
  • It breaks down harmful chemicals (bilirubin and ammonia) produced by the body and keeps the body regulated and healthy.
  • It manufactures proteins to help maintain blood purity and proper flow.
  • It breaks down hormones, detoxifies water and removes drugs, alcohol and environmental toxins
  • And it filters waste products from your blood.
Trouble is; the liver also stores all the toxins that our body cannot break down.
You see the liver is broken into three zones, each with a specific function. The blood enters the first zone, travels to the second and third zone then leaves the liver - with each zone being susceptible to its own illnesses.
Amazingly, the liver can regenerating itself, however today with the consistent abuse from our fast paced lifestyle our liver is paying a hefty price.
Dangerous Eating Habits
Studies show that a fast food diet of burgers, fries and soft drinks can damage the liver.
It is normal for your liver to contain some fat, but if the weight of your liver is more than 10% fat, then you have fatty liver and you may develop more serious complications.
When we eat too much fatty food it increases an enzyme called alanine aminotransferase (ALT) an enzyme which indicates liver damage and increases the risk of developing Type 2 diabetes, as well as hepatitis C.
Fat cells are building up in the liver and endangering our health. Due to our modern lifestyles, doctors are seeing a wide range of preventable illnesses.
The deficiencies in our diet as well as the excessive and habitual consumption of alcohol, tobacco, caffeine, food additives, pharmaceutical and OTC (over-the-counter) drugs are killing our liver cells.
Plus, environmental pollutants such as garden chemicals, cosmetic ingredients, home repair materials and household cleaning products are overtaxing our liver.
A damaged liver has difficulty removing toxins. And, if toxins remain in our system they can build up in our blood and our brain.
A struggling liver can cause a variety of health problems, including:
  • Headaches
  • Dark urine
  • Loss of appetite
  • Nausea and vomiting
  • Diarrhea, and light colored stools
  • Enlarged blood vessels, easy bruising
  • Anxiety and depression
  • Mental confusion
  • PMS 
  • Exhaustion and fatigue
  • Jaundice, or yellowing of the skin
  • Impaired libido (sex drive) 
  • Food allergies and chemical sensitivities
"Remember..Research is the key to your cure!"

Happy & Healthy New Year to You!

Monday - December 23, 2013 @ 10:43:42


Merry Christmas, Happy Holidays,
Happy, Healthy New Year!

May you be blessed with happiness, good health, love and the delight of being with family and  friends this wonderful Christmas and Holiday Season.

The opportunity to serve you and your family during this past year has been a gratifying experience for us.

Our staff and support volunteers look forward to meeting and assisting you throughout the upcoming Year.

We wish You All a Happy, Healthy New Year!

God Bless YOU!

Yvette, Elizabeth, Susan, Carol, Warren, Desiree  and
Facebook Team: Rob, Amy C, Amy B, Victor, Ben, Pierre

Rare Connect

Saturday - December 21, 2013 @ 10:30:01

RareConnect wishes you happy holidays.
View this email in your browser

Wishing you warm holiday greetings from the team at RareConnect

Thanks for being a member of

Connecting Rare Disease Patients Globally

"Remember..Research is the key to your cure!"

A Story from Jennifer Wood and her journey with EPP

Thursday - December 19, 2013 @ 22:00:06

Jennifer Wood

Type of Porphyria: 
Erythropoietic Protoporphyria (EPP)

All my life I have been an indoor kind of girl. I really didn't think I had much of a choice. Every time I went outside, I was in excrutiating pain. Before I was even old enough to know better, I would stay indoors.
When I was about 18 months old, my mom took me to the beach near where we lived in Florida. Within a half hour, I started screaming. Nothing could be physically seen wrong with me until the swelling started. Then I turned purple, so when the doctors saw me, they said I had been stung by a jelly fish. It seemed logical to my parents. Months later the same thing happened and the doctors said it must have been caused by decomposed jelly fish, or maybe even an allergic reaction to the sunscreen. Each time it ended the same; me swollen and purple and the doctors not knowing the cause.
As I got older, I learned to adapt by wearing certain clothing and staying out of the sun. If I was forced to go outside for some reason or another, I was very quick to spot the shaded areas so the pain could be lessened a bit. My clothing tends to look a bit extravagant, especially my Sunday dress. When I take a simple dress; add long satin gloves, big hats (always nicely decorated to match dress) and topped off with a parasol, people just think I'm an extravagant person. It's easier for me if they think that than have to explain to them that sunlight is painful.
At work my co-workers call me the "vampire" because I work in a dark corner with all my windows covered. Any time I have to walk outside, I have on a big hat and gloves. For me my biggest frustration is that I only got my diagnosis in October 2005. I am a 28 year old woman who was thought to be crazy by everyone elseeven doctorsuntil the diagnosis. I have been told that it was only in my head and that the sun could not be hurting me until my last episode.
Last June, I was outside staying in the shade the entire time and again it was for only about 30 mintues. Even with my long sleeved shirt, my arms were stinging, my hands swelled up, my eyes swelled shut and every part of me that wasn't covered with heavy fabric turned purple. I spent a couple days crying in pain. One night during this period, I couldn't sleep so I got up and decided to watch a movie. It was about children who couldn't be exposed to sunlight. I watched the extra features and found there are a number of diseases that made sunlight painful. So I went on-line, researched them, and found the APF. They lead me to a dermatologist. I went to the only local dermatologist in my area. He then sent me to Vanderbilt because he admitted that my case was a bit out of his range.
That doctor was wonderful. She talked to me, asking questions I never thought were relevant, like what happend when my gall-bladder was removed. And after a good long while, she looked up at me said, "We'll have to do some tests to make sure, but I bet the farm it's porphyria." Then after all the blood tests came back, she knew she was right. I had EPP. If I could have hugged her through the phone, I would have. To finally have a name for what's wrong with me, know that there are others out there like meand know that I'm not crazywas a real relief.
Since my diagnosis, I have been involved in seminars at Vanderbilt about rare skin conditions and diseases. They also want me for the liver seminars in the future. I gladly volunteer to help spread some light on this disease that so many doctors know nothing about, so maybe someone else in the future can have a quicker recognition of their condition than what I had.

"Remember..Research is the key to your cure!"

AIP: An Educational Webcast For ED Providers

Wednesday - December 18, 2013 @ 20:14:19

In this webcast, Eric Gross, MD, describes the gastrointestinal, neurological, cardiovascular, and urologic symptoms of AIP. He explains the precipitating factors that may lead to an AIP attack and also outlines the diagnostic pathway and the commonly used tests to screen for AIP.

Dr. Gross is a faculty physician in the Department of Emergency Medicine at Hennepin County Medical Center, Minneapolis, Minnesota. He is also a professor of emergency medicine at the University of Minnesota Medical School.

"Remember..Research is the key to your cure!"


Tuesday - December 17, 2013 @ 10:30:02

Welcome all NEW MEMBERS!   

Were so glad to have you here. Who ever signs up to the Purple Light Blog and is the 100th person will receive a gift from the APF. So what are you waiting for who's going to win? 

"Remember..Research is the key to your cure!"

Suffer from Chronic Pain watch this EMC course on Discovery Channel

Saturday - December 14, 2013 @ 10:30:01

100 million American adults live with chronic pain. That's more than cancer, diabetes and heart disease combined. According to the Institute of Medicine, the high prevalence of chronic pain suggests that the condition is not being adequately managed. Undertreatment of chronic pain creates large costs to the healthcare system and the U.S. economy; we spend more than $560 billion in the U.S. each year on chronic pain-related healthcare costs. Moreover, chronic pain can carry significant physical and emotional burdens.
The Institute of Medicine has called for a better understanding of the impact of pain in an effort to reduce its toll on the people who suffer from it including the impact on their economic, physical and emotional wellbeing.
Pain Matters seeks to do just that. The documentary explores what chronic pain is, its individual and societal impact, and the future of pain management through the stories and struggles of six individuals living with chronic pain and their loved ones, as well as perspective from leading national experts in pain management. For more information about chronic pain and the documentary, please click here.

Watch the show!

Pain Matters premieres on November 16 and airs again on December 7 and 14.
"Remember..Research is the key to your cure!"

Research Studies Available

Wednesday - December 11, 2013 @ 22:17:49

The Porphyria Consortium

Research Studies Available!

Dear APF Members,
The Porphyrias Consortium is pleased to let you know that they are enrolling patients in studies for the following diseases. To read more about each study, including eligibility criteria and who to contact, please follow the links below:
A confirmed diagnosis of a porphyria or have a relative who has been diagnosed with a porphyria

Acute Intermittent, Porphyria Hereditary Coproporphyria, or Variegate Porphyria

Erythropoietic Protoporphyria (EPP)

Porphyria cutanea tarda (PCT)

If you have not done so already, please join the Porphyria Registry.
Joining the Porphyria Registry is crucial in determining the incidence of Porphyria in the United States.

"Remember..Research is the key to your cure!"

SUPPORT Rock n Roll Race for EPP!

Tuesday - December 10, 2013 @ 10:30:03

raised so far

1 % to goal


New Orleans Marathon~Rock 'n' Roll Race Day For EPP Disease! 
Training buddies: Polly Barton Harvard Family & Friends

New Orleans Marathon~Rock 'n' Roll Race Day For EPP Disease!

 My wonderful daughter at the Beach all covered up because she has a rare disease called Erythropoietic Protoporphyria (EPP) or Protoporphyria she must keep covered from head to toe so she does not get sick. What a good sport she is.
Thank you for visiting my fundraising page for the American Porphyria Foundation!
 I will be running the New Orleans Marathon Rock 'n' Roll on 2-2-2014.
 I am raising awareness for my wonderful Daughter that has a rare disease call Porphyria~ EPP!
I hope that family & friends will all take a few minutes to donate it goes to "Protect the Future and Training more Doctors" to become aware of this rare disease.

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.  You will also be able to donate any amount and receive a print out of your donation for tax purposes.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!
Everyone is invited to participate & donate for this wonderful cause, PLEASE sign up TODAY all funds go directly to the American Porphyria Foundation.
 For more information on EPP Porhyria disease please visit:
Thank You,
Polly Barton Harvard

"Remember..Research is the key to your cure!"

Shining a Light on the Damage Daily Sun Exposure can cause

Sunday - December 8, 2013 @ 10:30:01

Shining a Light on the Damage That Daily Sun Exposure Can Cause: Study Highlights Need for Better Sunscreens

Published: December 5, 2013.
 By University of Michigan Health System 

Go to mobile page.

ANN ARBOR, Mich. A low level of daily exposure to a common component of sunlight can cause skin damage at the molecular level after just a few days, new University of Michigan Medical School research shows.
The findings highlight the need for better sunscreens to protect against these damaging rays, and prevent the process that can cause skin to look old, wrinkled and sagging prematurely.
In a new paper published online in JAMA Dermatology, the researchers show that damage starts after just two daily exposures to a low amount of ultraviolet A1, or UVA1, light which makes up most of the UV light we are exposed to throughout the day, and tanning bed light too. Very few of the ingredients in sunscreen products effectively protect against UVA1. The damaging process kept going after further daily exposures.
By showing that repeated exposure to the type of UVA1 light that we typically experience on a sunny day causes these damaging processes in the skin, the researchers hope it will lead to the development of new protective ingredients in sunscreens, and more caution about routine sun exposure throughout the day.
The study was done by a team from the U-M Department of Dermatology's Photobiology and Aging Skin Research Program, and funded by the National Institutes of Health.
The researchers were able to measure the effects of UVA1 at the molecular level using advanced gene expression analysis of skin samples from human volunteers.
The researchers shined a low level of pure UVA1 rays, as might be encountered in daily life, on small areas of 22 volunteers' buttocks. A day later, they measured changes in skin pigmentation. Then, they took tiny samples of skin, in order to detect which genes had been 'turned on' by the light exposure. They repeated this process three more times on each participant.
After just two exposures, UVA1 rays caused skin cells to make molecules that break down the protein called collagen, which makes skin firm, smooth, and youthful in appearance. The UVA1 also caused the skin to darken a little with each exposure, but this tan didn't protect against further production of the collagen-destroying molecule, called matrix metalloproteinase 1 or MMP1, when the skin was exposed to more doses of UVA1.
"Premature skin aging from UV exposure has gotten a lot of attention in the last 10 years, but most researchers have focused on UVB rays, which cause sunburn," says first author Frank Wang, M.D. "But there is very little UVB in sunlight, and most UVB exposure is at midday. During the rest of the day it's mostly UVA, with UVA1 being the majority. UVA1 is also the main component of tanning booth light. So, we wanted to look at whether it can predispose skin to premature aging by simulating repetitive daily exposure. And we found that it can. Furthermore, the mild tanning that occurs does not seem to protect against damage from additional exposures."
The study exposed the fair-skinned volunteers in a repeat manner to the amount of UVA1 they would receive in about two hours of strong sun exposure. Statistical analysis showed the pattern of MMP1 production increased progressively with repeated exposure in the majority of patients.
A medical dermatologist and assistant professor of dermatology, Wang notes that he often observes the collagen-damaging effects of repetitive sun or tanning booth exposure -- with people in their 20s and 30s coming in for other conditions, but with clear signs of premature aging to their skin.
The U-M researchers, led by senior author and lab director Gary Fisher, Ph.D., the Harry Helfman Professor of Molecular Dermatology and Professor of Dermatology, have previously shown similar changes in skin cells from other types of UV light including UVB.
However, in contrast with what the researchers had seen with their UVB experiments, the repeated UVA1 exposures didn't suppress the genes that make the molecules that become collagen.
The bottom line, they say, is that the new findings suggest a need for new sunscreen ingredients that can protect against UVA1 rays. Currently, only zinc oxide and avobenzone are approved by the U.S. Food and Drug Administration as sunscreen ingredients capable of blocking UVA1. Window glass, and most clothing, also don't necessarily filter out all UVA1.
Because UVA1 light from the sun reaches the surface of the earth whenever it's light out, the new research suggests that sunscreen with UVA1-blocking components could be useful throughout the day, not just during the peak sunburn hours of late morning to early afternoon, when UVB is most intense.

Though the current study didn't assess the impact of UVA1 on genetic changes that can lead to skin cancers, other forms of UV are firmly linked to most types of cancerous skin lesions.

"Remember..Research is the key to your cure!"

Global Genes Day

Friday - December 6, 2013 @ 10:30:00

"Remember..Research is the key to your cure!"

Global Genes  RARE Project
Global Genes RARE Project and a host of partners are proud to continue our RARE Webinar Series, a series of educational webcasts this year on relevant and timely topics that should be of interest to the RARE community.
World Rare Disease Day Planning 2014
 Ideas and Suggestions to Host Your Own
World Rare Disease Day Event

December 11, 2013
11:00 am Pacific Time
Register today - space is limited!

With World Rare Disease Day right around the corner (February 28th, 2014), this session will explore event ideas to create awareness for your specific rare disease as well as the entire rare disease community as a whole.

I would encourage you to register and join the discussion.  I would also ask that you send this email along to your community and rare friends that might also be interested in the topic.

Thank you,

Carrie Ostrea
Advocacy Director / Parent Advocate

"Remember..Research is the key to your cure!"

Medical Chaos for Tonya Carpenter- Love

Wednesday - December 4, 2013 @ 12:12:13

Tonya Carpenter-Love

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)
 Medical Chaos
In 1984 I was hit by a car, and after more than 22 surgeries, nothing has ever been the same. In 1986, I started having problems with ringing in my ears, extreme hearing fluctuation and visual distortions. The symptoms led to a diagnosis of Menieres disease in my right ear in 1986. In 1990 I was diagnosed with Autoimmune Disease, which supposedly had caused the loss of hearing in my left ear. At that time my doctor tried, without success, to treat me with chemotherapy. There was a break in the treatment long enough for me to give birth to my son. I stayed miserably sick during the four long years between chemo and pregnancy. I was finally taken off the chemo treatment after it had eaten my bladder lining.
My appendix was removed unnecessarily while visiting an ER for extreme stomach pain. Actually, I have been to more ERs with abdominal pain than I can count, but other than the time my appendix was removed, there was never any clue as to what might be causing the pain. Over the years Ive heard such explanations as Its just a bad case of gas to There is nothing wrong with you! There were times when I would pray and beg for death, times when I would be so mentally impaired that life had no other meaning cruel harsh hopelessness, times when I could not get out of bed, and times of loneliness when no one could understand what I was going through.
I was finally diagnosed with porphyria two years ago, after being trapped for six hours in a public restroom with severe abdominal pain. I cried out for help to my latest primary care physician, and something clicked for her like it had for no other doctor in my life. After completing two 24-hour urine tests and not knowing what my physician was looking for, I was called into the office and given the diagnosis of Acute Intermittent Porphyria.
My name is Tonya; I was born in Tennessee and raised in Alabama. I am 42 years old and have no known family medical history, as I was adopted at age four. Before I was diagnosed with AIP, I had never heard the word porphyria. However, I have always known that I was different. Even before my porphyria diagnosis, I had many other medical diagnoses on which to blame my strange and many symptoms.
Although the symptoms never really matched the diagnosis, I had the answers, or so I thought. In these two short years, Ive not only learned how to pronounce the word, but I have also learned much about what makes my attacks become active. I still continue to have days and nights where my world is upside down, my pain is unbearable, I cant complete a simple task and loneliness is my constant companion. However, I have gone through the phase of What is Porphyria? and the phase of What does it mean for me? I am now entering the phase of, What can I do to help others? If you would like to contact me in regards to porphyria you may do so by writing
Tonya Carpenter-Love

"Remember..Research is the key to your cure!"

Dr. Herbert Bonkovsky speaks about the the Liver & Supplements

Wednesday - November 27, 2013 @ 11:28:34

Charlotte researcher says body-building, fat-burning supplements can cause liver damage

- Carolinas HealthCare System
Dr. Herbert Bonkovsky, director of the Liver, Digestive and Metabolic Laboratory at Carolinas Medical Center.
Consuming herbal and dietary supplements for body building or weight loss can lead to serious and sometimes irreversible liver disease or even death, according to a recent study co-authored by a Carolinas Medical Center researcher.
Dr. Herbert Bonkovsky, director of the Liver, Digestive and Metabolic Laboratory at CMC, said people should be careful about taking supplements, which are not regulated as strictly as drugs by the federal Food and Drug Administration.
There needs to be tighter scrutiny and oversight concerning the distribution of these supplements so that consumers understand the dangers associated with them, Bonkovsky said.
Bonkovsky and his colleagues presented their research in November at a meeting of the American Association for the Study of Liver Diseases. It was the largest study of its kind conducted by the national Drug-Induced Liver Injury Network, also called DILIN. The network was created in 2004 to advance research into liver injury caused by prescription and non-prescription medicines, which is the most common cause of acute liver failure.
Bonkovsky, a member of the network since its inception, said researchers have enrolled more than 1,000 patients with all kinds of liver injury due to drugs. That does not include acetaminophen, a common drug sold under brand names including Tylenol. Acetaminophen is the 800-pound gorilla when it comes to liver injury and fatalities, eclipsing all other causes, Bonkovsky said.
About half of all liver failure is caused by acetaminophen. The damage often occurs when someone takes an overdose or when people taking multiple medicines accidentally consume an excessive amount of acetaminophen.
DILIN research has focused on other drugs, including herbal and dietary supplements, which are regulated as foods instead of drugs by the FDA. From 2004 to 2006, such supplements accounted for 4 percent to 6 percent of liver injury cases. But in the past two years, that number has grown to about 16 percent, Bonkovsky said.
Research subjects who reported taking supplements for body building were all men, and most were taking anabolic steroids, he said. The next most common reason for taking supplements was to lose weight. Most of those patients were women taking fat burners, such as green tea extract.
Body-building supplements included certain Oxi-Elite Pro products that were recently recalled by USPlabs after being linked to liver illnesses in Hawaii and other states. One person died, another received a liver transplant, and others are awaiting liver transplants in connection with illnesses induced by the supplements, according to WebMD.
The FDA sent a warning letter to USPlabs recently telling the company to stop distributing products containing the ingredient aegeline, which the FDA said lacks evidence of safety.
Bonkovsky said liver damage caused by supplements can be every bit as severe as that caused by (prescription) drugs.
The take-home message is that these herbals and dietary supplements are not necessarily safe, he said. Theyre not necessarily benign even though theyre marketed as being natural and we all think that natural is safe.

If you have any questions about this post please feel free to read more about Dr. Bonkovsky An APF Expert Doctor. 866-apf-3635.

"Remember..Research is the key to your cure!"

Read more here:

In Memory of Ellane Heflin

Sunday - November 24, 2013 @ 10:30:02

 The APF is sad to announce that Ellane Heflin, mother of APF Executive Director, Desiree Lyon Howe, passed away Nov 26 in Destin, Florida at age 85. Ms. Heflin, who had AIP, was an APF member since it was founded 31 years ago.  To encourage others to participate in porphyria research, Ms. Heflin volunteered as a research patient a number of times since 1982 and volunteered for her last porphyria research project at age 84. She was the oldest person and APF member to participate in porphyria research to date.

 She is survived by her children, Elizabeth Ruth Petersen, April Heflin, Deborah Fedele, Dr Joseph Heflin, and Desiree Lyon Howe, and by her grandchildren, Lelia Brougher, Spring Howell, Miranda Dennis, Patrick Petersen, Parker Heflin, Kelsey Heflin, Sarah Taylor and Ian Murdoch, and by her great grandchildren, Elizabeth Brougher, William Brougher, Chloe Mettenbrink, and Gage Mettenbrink and by her sister, Doris Jackson and brother, Louis Workman.

The funeral will take place in Henegar, Alabama on Saturday, November 30, 2013.

We sincerely express our sympathy to Ellane Heflin's family.  Memorials and expressions of sympathy in her memory can be sent to the APF, 4900 Woodway Dr, Suite 780, Houston, TX. 77056.

"Remember.Research is the key to your cure"

An Important Message about Panhematin from Desiree Lyons APF Director

Tuesday - December 10, 2013 @ 13:30:40

It has come to my attention that there is a great deal of misinformation floating around about a new research project with Panhematin . Unfortunately, this misinformation has some truth but is also replete with incorrect assumptions. I am happy to elaborate for any who want to know all about the research. Below is some of the story.

Now for the why hemin/Panhematin is being researched since it has been an effective treatment for decade. Note that the research grant shorn below says for treatment and prevention.. Panhematin is being widely used for prevention of attacks, because many doctors and experts have found it to be highly effective to prevent acute attacks. But that purpose is not on the label. Since it is being used more and more for this purpose , it is important to have research behind it . Some people have very critical attacks that are horribly painful and could be life threatening without treatment. Without Panhematin, I would have died many times. I only wish long ago we would have used it to prevent my attacks.

In addition, the Panhematin label say it is to be used for women with attacks congruent with leuteal phase of the menses. As you all know , it is used for all attacks and in men and women. Therefore, it is important to have this research, too. Therefore, the U.S. Food and Drug Administration just announced it has awarded 15 grants totaling more than $14 million to boost the development of products for patients with rare diseases. Karl Anderson, University of Texas Medical Branch Galveston, Phase 2 Study of Hemin for the Treatment and Prevention of Porphyria Attacksabout $1.5 million over four years. This is actually not much over four years considering the wide range of studies that will be conducted.

Some people are saying that this research is not necessary and that we could and will have heme arginate/Normosang instead. This is not the case. Heme arginate, which has the trade name Normosang, is licensed for use outside the US in a number of countries. Panhematin is only available in the USA unless that is a special request. The APF and Dr. Anderson and other experts tried for many year to get heme arginate to the USA, however, the company would not bring it here. First, there was an issue with the blood bank The blood bank in Finland where it was being manufactured, did not have the requirement of USA blood banks that the FDA required. Also, they would have to spend many millions for research to bring heme arginate here. .

Heme arginate and Panhematin are both owned by Recordati, an Italian Pharma company. Panhematin and heme arginate cost approximately the same Although some feel that heme arginate is more stable, now albumin is being used with both products , not just Panhematin. See for use.
Knowing all of the story is essential before making assumptions where medicine and treatments are concerned There is much more to all of this but the most important issue is that patient volunteers are needed. We sincerely than all who have volunteered YOU ARE THE MEDICAL HEROS DRIVING US CLOSER AND CLOSER TO A CURE .
Participant will fly to the University of Texas Medical Branch in Galveston where Dr. Karl Anderson i conducting a number of porphyria research projects. Some of those projects do not require travel but only require your blood and answer questions that are very pertinent to the porphyria research. Many thank, d

"Remember..Research is the key to your cure!"

Holiday Shopping Time! Get your loved ones an American Porphyria Foundation T-Shirt Today!

Friday - November 22, 2013 @ 15:30:01

Want to give your loved one a gift & raise awareness for the American Porphyria Foundation?

American Porphyria Foundation

T-Shirts for SaLE

19.00 Each Includes Shipping ~ Sizes are S, M, LG, XL, 2 XL, 3 XL

 You can order a T-shirt by email. Orders can be emailed to  

PLEASE INCLUDE: I must have name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one.
 To accept payment: 1 of 2 options I can accept a VISA/MC only. I must have full name on the card, account#, exp. date, 3 digit code on back of card CVV-.

 Your information is kept secure and never shared or put on a list.
 We can accept will a money order & personal checks.  You must have name/address/phone # on them. 

For privacy purposes I will be happy to email you the address to send your check or money order to.   Once I receive the order I will ship out your product. 

All products will be shipped out Priority mail with tracking.  Each person will receive a receipt with Purchase.

       "Remember..Research is the key to your cure!"

Research Studies Available! Can you or a family member Participate?

Friday - November 22, 2013 @ 14:26:56


Research Studies Available!

The Porphyrias Consortium is pleased to let you know we are enrolling patients in studies for the following diseases. To read more about each study, including eligibility criteria and who to contact, please follow the links below:

A confirmed diagnosis of a porphyria or have a relative who has been diagnosed with a porphyria

Longitudinal Study of the Porphyrias

Acute Intermittent, Porphyria Hereditary Coproporphyria, or Variegate Porphyria

Clinical Diagnosis of Acute Porphyria

Erythropoietic Protoporphyria (EPP)

Mitoferrin-1 Expression in Erythropoietic Protoporphyria
Measuring the Effects of Isoniazid Treatment on Erythrocyte and Plasma Protoporphyrin IX Concentration in Patients with Erythropoietic Protoporphyria
Erythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact)

Porphyria cutanea tarda (PCT)

Hydroxychloroquine vs. phlebotomy for porphyria cutanea tarda
Do We Have Your Correct Information?
Stay Informed!
We want to keep you informed with the latest news and information. Keeping your contact information up to date can be done quickly and easily on the Web:
Click Here to Update Your Information
About the Porphyrias Consortium
The Porphyrias Consortium is a network of physician scientists, and clinical research resources dedicated to conducting clinical research in the Porphyrias. We Can Help You: Become aware of clinical research and clinical trial opportunities; Connect with expert doctors; Get help in managing your disease. 
Learn More >
The Porphyrias Consortium is a part of the National Institutes of Health's Rare Diseases Clinical Research Network. For more information,
The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate. Participation in research studies is voluntary. Deciding not to participate in a research study does not affect your ability to receive care at any of our Clinical Centers or from other physicians.
Rare Diseases Clinical Research Network
The Rare Diseases Clinical Research Network (RDCRN) was established by the National Institutes of Health (NIH) to develop research studies for rare diseases, and to encourage cooperative partnerships among researchers at over 150 clinical centers around the world. This increased cooperation may lead to discoveries that will help treat and perhaps prevent these rare diseases, as well as produce medical advances that will benefit the population in general. The Rare Diseases Clinical Research Network is comprised of a Data Management and Coordinating Center and 17 consortia studying over 100 rare diseases.
Department og Health and Human Services National Institutes of HealthOffice of Rare Diseases ResearchThe Porphyrias Consortium is a part of NIH Rare Diseases Clinical Research Network (RDCRN). Funding and/or programmatic support for this project has been provided by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the NIH Office of Rare Diseases Research (ORDR).NINDS
The National Institutes of Health does not endorse or recommend any commercial products, processes, or services. The views expressed in written materials or publications do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.

"Remember..Research is the key to your cure!"

Recordati Rare Diseases, Inc. is committed to providing support to the AIP community.

Tuesday - December 3, 2013 @ 17:14:33

Recordati Rare Diseases, Inc. is committed to providing support to the AIP community.
 PAN_RECThe Recordati Rare Diseases Reimbursement Support Program is a free service available to patients, caregivers, medical billing staff, healthcare providers, and others who have questions about insurance coverage and reimbursement-related issues including:

·         Billing issues
·         Insurance verification
·         Prior authorization support
·         Insurer education
·         Policy monitoring

Reimbursement Support Contact Information:
Call: 866-209-7604 (M-F 9AM-5PM ET)

For further information, contact the APF:

"Remember..Research is the key to your cure!"

Fundraiser Time with Oksana Henn!

Friday - November 22, 2013 @ 10:30:02

Meet AIP Patient Oksana Henn & Her Fundraiser Event

I have AIP diagnosis for over 17 years already. I was diagnosed in Ukraine after I became completely paralyzed (it took me over 10 years to get diagnosed). It took me 2 years to get back up on my feet and functions again. When I moved to USA (Denver, CO) 15 years ago, I found out about Dr. Anderson and went to meet him to confirm my AIP diagnosis. Ever since that time he has been consulting me and my doctors on how to treat my symptoms and what to do with my AIP in general. Some doctors listen to his suggestions, some don't. Those who do not, think that they know more than AIP specialists and try treating me with different medications and methods that actually harm me. We need more doctors like Dr. Anderson, who actually understands and knows AIP and does everything to help patients like me. Over the years my AIP symptoms have been getting worse. Panhematin is the ONLY medication that treat my AIP attacks time and time again. The APF helped me many times with referrals to doctors, suggestions, and just listening to me. APF, thank you very much for everything you do! I have been enrolled in a few AIP research studies over the years. One of them identified the exact gene mutation that I have. This was completely free for me. Another study that is going on now identified my dad as being an AIP gene carrier. This information will help my family (sisters, nieces and nephews) to prevent from being sick for a long time like me. I want to help APF by running a fund raiser on my site. APF is doing a great job educating doctors to be specialized in AIP and other porphyrias. I want this and other fund raisers that I will have to help pay for education for Protect The Future program. 
Our health and well being depends on them!

Here is a great FUND RAISER for the American Porphyria Foundation:
50% of all proceeds from sales on the site (below) between now and January 1-st, 2014 will go to American Porphyria Foundation.
 Please to order a basket for you and help out your favorite charity! There are different gift baskets for every occasion! Please support the APF & PTF program. Thank you!!!

"Remember..Research is the key to your cure!"

Read about Ruth Taffet

Monday - November 18, 2013 @ 10:30:02

Ruth Taffet

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

I was diagnosed with AIP 45 years ago. My 24 hour quantatative urine was sent to Dr. Watson. The illness began with a ruptured tubular pregnancy. After the operation, I was in extreme pain. I was sent home not being able to retain food or move my bowels and was extremly nauseated. Nine days later the doctor ordered over the phone a triple suppository of compazine. This caused me to faint immediately, and I was rushed to the hospital. My pulse 180, was sent to Booth Memorial in Queens N.Y where they couldn't find out what was wrong, I was given a barium enema, a levine tube, many medications that had disastrous effects, including going into a coma. Fortunately, the doctors that were attending the women in the next bed said, "I know that woman is not crazy." They happened to look in my bedpan and saw red urine. I awoke completly paralyzed. Pins could be stuck all over my body. I couldn't feel anything.
Finally, three months later I was released from the hospital. My hands were shaking, and eventually I couldn't stand the smell of food and was depressed. I was taking a pill that had been killing people in England,. About five years ago, doctors discovered I didn't have any Iron in my bone marrow. Every test proved negative, but in six months of taking iron, my count was normal.
I now have a hemotologist check my blood every six months. Since I had a bout with blisters, I believe I might have HCP. I am eighty years of age, I'm carefull of all medication. I am healthy and only take a mild blood pressure pill. My case was published in the medical journal, Lancet, and was written by Dr. Irwin Cohen in 1962.
"Remember..Research is the key to your cure!"

Do you think to much? Is it Healthy? How to Stop Thinking too Much

Saturday - November 16, 2013 @ 10:30:01

It's a golden rule to think before you speak, but you can run into trouble when you think so much that you fail to act, or think yourself into a state of uncontrollable anxiety. Are you looking for a way to stop thinking too much?

EditPart 1 of 3: Letting Go of Your Thoughts

  1. 1
    Accept that you're thinking too much. Just like eating, thinking is something we need to do to survive, so it is sometimes hard to judge when you are doing too much of it. However, there are several red flags that you are doing too much thinking for your own good. Here are a few of them:
    • Are you consumed by the same thought over and over again? Are you not making progress by thinking about this particular thing? If so, this may be a sign that you should move on.
    • Have you analyzed the same situation from a million angles? If you've found toomany ways to look at something before you decide how to act, you may be being counterproductive.
    • Have you enlisted the help of your twenty closest friends in thinking about a particular thing? If so, then it's time to realize that you can only ask for so many opinions about the same idea before you drive yourself insane.
    • Are people constantly telling you to stop over-thinking things? Do people tease you for brooding, being a philosopher, or staring out of rainy windows all the time? If so, they may have a point.
  2. 2
    Meditate. If you feel like you don't know how to stop thinking, you need to learn what it's like to "let go" of your thoughts, so that it's something you can do deliberately.[1]Imagine that thinking is like breathing; you do it all the time, without even realizing it. But if you need to, you can hold your breath. Meditating will help you learn how to release your thoughts.
    • Just spending 15-20 minutes meditating every morning can make a dramatic impact on your ability to stay in the present and let go of all of your nagging thoughts.
    • You can also meditate at night to help yourself wind down.
  3. 3
    Exercise. Running or even walking vigorously can help you take your mind off of all of those annoying thoughts and to focus on your body. Participating in something particularly active, like power yoga or beach volleyball, will have you so focused on your body that you won't have time for your thoughts. Here are some great things to try:
    • Join a circuit gym. Having to switch to a new machine every minute when you hear that bell ring will keep you from getting lost in your thoughts.
    • Go hiking. Being around nature and seeing the beauty and stillness around you will keep you more focused on the present moment.
    • Go swimming. Swimming is such a physical activity that it's even harder to swim and think.
  4. 4
    Say your ideas out loud. Once you've said everything aloud, even if you're talking to yourself, you've begun the process of letting go. Walk around and pace if you have to. Once you've put your ideas out there, you've begun the process of putting them out into the world and out of your thoughts.
    • You can say them aloud to yourself, your cat, or to a trusted friend.
  5. 5
    Ask for advice. You may have exhausted your own thinking power, but someone else might be able to offer a different perspective that makes the decision clearer. This can help let go of your troubling thoughts. Your friend can make you feel better, can ease your problems, and can also make you realize when you're spending way too much time thinking.
    • Besides, if you're hanging out with a friend, you're not just thinking, right? That's something.

EditPart 2 of 3: Taking Control of Your Thoughts

  1. 1
    Make a practical list of the things that are troubling you. Whether you're writing on paper or a computer, you should first define a problem, write down your options, and then list the pros and cons for each option. Seeing your thoughts in front of you will also help you stop cycling through them in your head. Once you can't think of anything more to write, your mind has done its job, and it's time to stop thinking.
    • If making a list still doesn't help you make a decision, don't be afraid to follow your intuition. If two or more options seem equally appealing, thinking more will not make things clearer. This is when you should listen to something deeper.
  2. 2
    Keep a diary of the things that are troubling you. Instead of lingering over your most persistent thoughts, jot down all of the things on your mind every day. At the end of one week, go over what you've written and make a note of the things that are troubling you the most. You need to deal with those first.
    • Try to write in your diary at least a few times a week. This will help you get used to the idea of a "thinking time" and will help you sit down with your thoughts, instead of having them trouble you throughout the day.
  3. 3
    Have a to-do list. Make a list of all the things you have to do on a certain day. Unless "brooding" is on your list of priorities, this will force you to see that you have more important things to do than to sit around pondering the meaning of the universe! The quickest way to organize your thoughts is to put them into something actionable. If you're thinking that you haven't gotten enough sleep lately, make a plan for getting some Z's pronto instead of worrying about it!
    • The list can be practical and can deal with the bigger things, like: "spend more time with my family."
  4. 4
    Set a "thinking time" aside for yourself every day. This may sound crazy, but picking a time every day for yourself to worry, wonder, be dreamy, and to get lost in your thoughts can help you control your thoughts in a more productive manner. If you need to, give yourself an hour, say, from 5-6:00 every day. Then, try to get the time down to 5-5:30. If an upsetting thought comes up earlier in the day when it's inconvenient to deal with it, just tell yourself, "I'll worry about that at 5 pm."
    • This may sound ridiculous, but you've got to try it before you knock it.

  1. 1
    Solve as many problems as you can. If your problem is that you think too much about nothing, worry for no reason, or think about things you can't control, then there's not much you can do to "solve" the problems that are plaguing your thoughts. But think of the ones you can solve and make an active plan for going about doing so, instead of thinking, thinking, thinking without it going anywhere. Here are some ideas for what you can do:
    • Instead of thinking about whether or not your crush likes you, take action! Ask him or her out. What's the worst that can happen?
    • If you're worried that you're falling behind in work or school, make a list of all of the things you can do to succeed. And then do those things!
    • If you like to think, "What if" a lot, try to do the things that are feasible.
  2. 2
    Be social. Surrounding yourself with people you love will keep you talking more and thinking less. Make sure to get out of the house at least a few times a week, and make a point of working to develop lasting and meaningful relationships with at least two or three people in your area that you can hang out with. You'll be much more prone to thinking if you spend a lot of time by yourself.
    • Alone time is definitely a good thing, but it's important to mix up your routine with some time to hang out with your friends, let loose, and have fun.
  3. 3
    Get a new hobby. Take the time to explore something completely different and out of your comfort zone. A new hobby, no matter what it is, will keep you focused on the task at hand as well as interested in getting results. Don't think that you already know what you like and don't need any more distractions. Trying a new hobby can help you live in the moment and focus on your art, your craft, or whatever. Try some of these:
    • Write a poem or a short story
    • Take a night class in history
    • Take a pottery or ceramics class
    • Learn karate
    • Take up surfing
    • Try biking instead of driving
  4. 4
    Dance. There are a number of ways to dance -- alone in your room, out at a club with your friends, or even by taking a dance class such as tap, jazz, foxtrot, or swing dancing. Whatever form of dance you encounter, you'll be able to move your body, listen to the lyrics, and live in the moment. It doesn't matter if you're a terrible dancer. In fact, that you would get you even more focused on your dance moves and less focused on all of your niggling thoughts.
    • Taking up a dance class would be a great way to start a new hobby and to dance.
  5. 5
    Explore nature. Get outside and start looking at the trees, smelling the roses, and feeling fresh water on your face. That will help you live in the moment, embrace nature and the impermanence of your existence, and to see a world outside of the one you created inside your own head. Put on your sunblock and your sneakers and stop being cooped up in your bedroom.
    • Even if you're not into hiking, running, biking, or surfing, make a goal of walking through a park at least once or twice a week, taking a weekend trip to something nature-related with your friends during your next vacation, or just going somewhere were you can stare out at a big blue lake or ocean.
    • And if that seems like too much work for you, just go outside. Being out in the sun will make you happier, healthier, and less likely to brood.
  6. 6
    Read more. Focusing on the thoughts of other people will not only give you insight, but will keep you from thinking about yourself too much. In fact, reading biographies of inspirational men and women "of action" may inspire you to see that behind every great thought, there is an equally great action. And reading books can also not make you want to do anything except for escape to a new world, which is also nice.
  7. 7
    Make a gratitude list. Every day, make a list of at least five things you are grateful for. This will make you focus on people and things instead of thoughts. If every day is too much, try doing it every week. Mix it up. Every little thing counts, even the barista who gives you a free refill of your coffee.
  8. 8
    Appreciate beautiful music. Listening to a great song can make you feel in touch with the world outside your own head. You can do this by going to a concert, playing an old CD in your car, or even getting a record player and some LPs and going old school. Close your eyes, soak in the notes, and live in the now.
    • It doesn't have to be Mozart or something meaningful or hoity-toity. Listening to Katy Perry can do the trick too!
  9. 9
    Laugh more. Be around people who make you laugh. Go to a comedy club. Watch a comedy or a TV show with a funny cast that you really like. Watch some funny YouTube videos. Do whatever you have to do to make yourself crack up, toss your head back, and not care about all of the things that are on your mind. Don't underestimate the importance the role of laughter plays in your mental health.

Rare Connect have you joined yet?

Thursday - November 14, 2013 @ 10:30:03

Have you joined rare connect yet?  If not please take some time to check it out from around the world all types of people with porphyria coming together to unite.

Check it out and sign up its free to do so.

"Remember..Research is the key to your cure!"

New England Journal of Medicine short EPP article

Wednesday - November 13, 2013 @ 10:30:00

Unblinded by the Lights

Robert Evans Heithaus, M.D., and Reed Hogan, M.D.
N Engl J Med 2013; 369:659August 15, 2013DOI: 10.1056/NEJMicm1211366
A 24-year-old man was transferred to the hospital for evaluation of jaundice and abdominal pain. He had a lifelong history of severe photosensitivity and wore long-sleeved shirts and sunscreen to limit sunburn. During the evaluation for abdominal pain, an initial upper endoscopy was negative. However, postendoscopy melena prompted a second look, which revealed multiple mucosal burns caused by the light source of the endoscope during the initial procedure (Panel A). Burns also developed on his fingers from the light source of a pulse oximeter (Panel B). A workup revealed elevated red-cell free protoporphyrin levels and elevated levels of porphyrin in the stool and urine. A diagnosis of erythropoietic protoporphyria was confirmed with genetic testing. Burns are caused by photoactivation of protoporphyrin deposits in tissues. This patient also has severe liver disease due to hepatic protoporphyrin deposition. He is being evaluated for combined liver and bone marrow transplantation.
Robert Evans Heithaus, M.D.
Reed Hogan, M.D.
Baylor University Medical Center, Dallas, TX

Global Genes Rare Project

Tuesday - November 12, 2013 @ 10:30:03

Global Genes  RARE Project
Dear Porphyria Friends,

Global Genes RARE Project and a host of partners are proud to continue our RARE Webinar Series, a series of educational webcasts this year on relevant and timely topics that should be of interest to the RARE community.
World Rare Disease Day Planning 2014
 Ideas and Suggestions to Host Your Own
World Rare Disease Day Event

December 11, 2013
11:00 am Pacific Time
Register today - space is limited!

With World Rare Disease Day right around the corner (February 28th, 2014), this session will explore event ideas to create awareness for your specific rare disease as well as the entire rare disease community as a whole.

I would encourage you to register and join the discussion.  I would also ask that you send this email along to your community and rare friends that might also be interested in the topic.

Thank you,

Carrie Ostrea
Advocacy Director / Parent Advocate

Gary Eysters Donation

Monday - November 4, 2013 @ 16:43:21

Gary Eysters Donation

Visit Gary Eyster's websiteGary Eysters Donation.   Esteemed artist, Gary Eyster, was an APF donor for many years.  Thanks to his good friend and APF member, Ralph Grey, Gary also donated his valuable collection of paintings to the APF upon his death.  Gary was an innovative, abstract expressionist with studios in Wilmington, North Carolina and York, Pennsylvania.  Working until his death in July 2013, Gary never ceased exploring ways to express and fine tune his artistic vision.  Garys training spanned the 1950s and 1960s with traditional art education at schools in Philadelphia, Richmond, London, Paris, and Wetzler, Germany.  Striving to break away from habits and routines that can stifle creativity, Gary searched for novel ways to introduce spontaneity and randomness into his artistic process.  This led him to paint with such unusual objects as plungers, squeegees, wide mouth jars and squeeze bottles.  Gary even created a number of works by applying paint and powdered pigments through layers of water to the canvas below.  This unique process also allowed him to pull monotype prints from the surface of the water, creating works that were simultaneously unique and derivative of their larger, canvas progenitors. 

Garys works were shown in some of the most prestigious galleries and shows in the world. He chose the APF to hold his works to help people with porphyria.  He also taught young men and women how to achieve the mastery of some of his techniques and was very interested in the Protect the Future (PTF) program to train future porphyria experts.  He understood the great value of present experts sharing their expertise with young doctors as he had shared his talent with young artists. The APF is grateful to Gary for his valuable gift.  If you are interested in viewing and /or purchasing these works, please see the website,  Your purchase will provide funding for the APF PTF and physician education programs. You can also contact the APF to be placed in contact with Ralph Grey, who can assist you with your questions or purchases. 

"Remember..Research is the key to your cure!"

Tips for the doctor's office

Saturday - November 2, 2013 @ 10:30:02

Tips for the doctor's office

Make Lists
You may not always need to share all of your information with every doctor you see but the following items are particularly important:
A list of all of your medications and needed refills, a summary of your medical history, a list of your recent tests, a list of your questions, concerns and new information, forms your doctor needs to address,
Plan Ahead For Your Doctor Visit
Prepare your questions and a list of your symptoms,  ( For example, racing heart, blisters, etc) Be concise. When you schedule your appointment, ask if you should have test results or other medical records sent to the doctors office before your visit. Nothing is worse than rescheduling for new tests you could have taken earlier or not had with you.
At Your Visit
Be on time.  Give and expect respect. Bring your lists and tell the doctor what you want to discuss and your goals for the visit. Be as brief as possible.  Communication is an especially important skill.  Make every word count because the doctor may only have 15 minutes to spend with you.
Be sure you understand what the doctor is advising you.  If not, ask questions until you understand.  If there is not enough time for all of your questions: Ask for handouts and brochures that will give you more information or schedule another visit.
You and your doctor may have different goals for the visit. For example, your doctor may want to just check your blood pressure, while you may have worries about possible surgery.
Many things can get in the way of helpful communication; emotions, communication style, different goals and lack of time all work against us. When emotions are high, logic is low. If you find that your emotions are interfering with your visit, explain this to your   doctor. Try taking a moment to reflect on what you want to say and try again.
Lastly, you may feel that you know more about certain aspects of porphyria than your physician.  Major medical journal articles are usually best accepted than internet articles. 
After the Visit
Often patients have questions they forgot to ask.  If it is urgent, call the office right away. Otherwise, check the educational materials to see if the question can be answered there.
If you still dont have the answer, call your doctor.  However, it is best to have the question clearly written.  Be aware that the doctor may not be able to answer your call until the end of the day, or next business day- but a nurse or physicians assistant may be able to help earlier.

 "Remember.Research is the key to your cure!"

Daylight Savings Fall 2013: When Do We Fall Back?

Tuesday - October 29, 2013 @ 10:30:03

Daylight Savings Fall 2013: When Do We Fall Back?

on October 27 2013 11:00 PM
Daylight Savings Time (DST) is nearing its end as colder months fall upon much of the U.S. Instead of long, sunny days, most U.S. states will set their clocks back an hour and enjoy an extra hour of sunlight in the morning but an earlier onset of darkness  in the evening.

Daylight Savings Time ends on Sunday, Nov. 3, at 2 a.m., when clocks go back to 1 a.m. DST usually ends the final Sunday in October, but this year, it occurs on November's first Sunday. 
The extra hour could help some folks catch up on the sleep they lost back in March, when Daylight Savings Time made everyone spring ahead and lose an hour of sleep.
DST was first proposed by entomologist George Vernon Hudson in 1895 as a way to extend daylight hours in summer. But it was adopted as an energy-saving measure by President Franklin D. Roosevelt in the United States and called "War Time," during World War II, from Feb. 9, 1942, to Sept. 30, 1945. The law was enforced 40 days after the bombing of Pearl Harbor.
These days, California and Arizona do not partake in Daylight Savings Time. There are mixed studies as to whether or not the time change actually helps to save energy, said.
Those who use personal computers, smartphones, tablets and other electronic devices  (just about everyone) dont have to worry about turning the time back because the devices automatically do it. On the first Sunday in November, however, those who do need to manually set the hour hand back should do so before going to bed.
In March, when everyone springs ahead, there are only 23 hours in the day. But when most of the country falls behind next month, there will be 25 hours in the day. What will you do with the extra hour? 
"Remember.Research is the key to your cure!"

NEW Caretaker Support Forum.

Sunday - October 27, 2013 @ 18:44:02

NEW Caretaker Support Forum.

Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forum for spouses or partners who help their loved one cope with porphyria.  To read more about Warrens story as a caretaker for a loved one with AIP view here.

The Caregiver Support Group strives to provide a forum to ask questions, share advice, experiences and provide a sounding board for those going through similar circumstances.

Our goal is to eventually provide multiple resources to assist caregivers in their day-to-day lives. This is your community and your input will help shape this service. Whether you are a spouse, partner, relative or friend of a porphyria patient, we want to hear from you. Contact the American Porphyria Foundation or email us at for more information.

We respectfully request that only caregivers of patients in the active process of diagnosis or with a diagnosis of a porphyria participate in this group.

8 Important Ongoing Research Projects that need your help

The Apf is currently involved in helping recruit diagnosed Porphyria Patients of all types. We need your help to make these studies a success. Many of the studies do not require any travel, and for some of them the travel will be provided. You can read about the ongoing studies by going to the Porphyria Research Consortium section on the Rare Disease Research Networks website.

If you haven't already please join the Porphyria Registry while you are there. It only takes a few minutes and it will help more than we can express.

"Remember. Research is the key to your cure!"

Reminders about finding a good APF Doctor for YOU

Thursday - October 24, 2013 @ 10:30:02

The American Porphyria Foundation promotes comprehensive care necessary for treating individuals with Porphyria.  This section of our website offers suggestions for finding a local doctor who can manage your Porphyria, options for having your doctor consult a Porphyria specialist, and information on arranging a visit to a Porphyria clinic.
Because Porphyria is so rare, few physicians have experience treating patients with the disease.  Most patients are in fact treated But the APF can help by putting your doctor's office in touch with a Porphyria specialist who can offer guidance on your care.
For those who need a diagnosis, you may be able to obtain a consultation at Porphyria clinic. Call the APF to reach a porphyria expert at a porphyria center.  The APF office will also guide you to doctors who are not experts but are knowledgeable about porphyria. You may be asked to send your blood, urine, and stool samples for evaluation in advance of a clinic appointment.  Especially if you plan to travel for a consultation, it is a good idea to call ahead and explain that you would like to be evaluated for Porphyria so that you can be sure you have done any necessary testing in advance.  If local video conferencing facilities are available, telemedicine consultation with a Porphyria expert is also available.
Regardless of your situation, it is best to establish a good relationship with a doctor in your area.  Developing a relationship with a primary care physician takes time and can be frustrating, particularly when you have difficulty finding a doctor who will manage your care.  In this section of the website, you will also find Tips for the Doctor's Office that may help.
If you're having trouble finding a local doctor, the following organizations' doctor finder or physician referral services could be helpful.  The APF does not recommend or endorse the doctors listed through these sites.
If you would like to read about supporting programs to ensure the quality of specialists in the field of porphyria, please see our Protect Our Future campaign information.

"Remember.Research is the key to your cure!"

Family Involvement with the Caretaker Support Forum~Please Join

Monday - October 21, 2013 @ 10:30:04

Caretaker Support Forum

New APF Caretaker Support Forum   "Please get involved with your family, you may save there life, with encouragement, understanding, knowledge, Doctors experience"~ Purple Light

Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forum for spouses or partners who help their loved one cope with porphyria. To read more about Warrens story as a caretaker for a loved one with AIP click here.

The Caregiver Support Group strives to provide a forum to ask questions, share advice, experiences and provide a sounding board for those going through similar circumstances.

Our goal is to eventually provide multiple resources to assist caregivers in their day-to-day lives. This is your community and your input will help shape this service. Whether you are a spouse, partner, relative or friend of a porphyria patient, we want to hear from you. Contact the American Porphyria Foundation or email us at for more information.

We respectfully request that only caregivers of patients in the active process of diagnosis or with a diagnosis of a porphyria participate in this group.

Remember.Research is the key to your cure!"

Doris Stevens Letter about VP

Saturday - October 19, 2013 @ 10:30:00

Doris Stevens

Type of Porphyria: 
Variegate Porphyria (VP)

Doris's Letter to Porphyria

Doris StevensFor therapy, a caring doctor had recommended I write about my illness, that I state what it has done to me and how it has affected my life and finally, what I hope will happen no matter how unrealistic. Since it took a better part of my lifetime to unravel the mysterious maladies that plagued me most of my life, it was difficult to write about it in a less compassionate form. It is important to understand when you read this that it is possible to have been born with more than one congenital anomaly. In my case, I was born with a mild Arnold Chiari Malformation which accounts for an inability to nurse, dizziness and clumsiness in infancy and adolescence. Porphyria symptoms were not present until my early to mid-teens.
I am sorry to inform you that I have never loved you. I have truly never understood you and even worse, no one else has understood you either! Starting from my earliest memories you have caused confusion and misunderstanding. You caused my parents to believe I was ill mannered at the table. Because of this I spent unspeakably cruel hours sitting at the dinner table being disciplined, eating my own regurgitated food, uncountable hours of stomach upsets, pain and tears. My mother always believed I personally rejected her since I couldn't nurse, and believed I rejected her excellent cooking efforts from the beginning of my existence. By the time I was 10, I was labeled a hypochondriac and clumsy. All this due to my dizziness, chronic mild aches and pains and chronic cramping constipation. My complaints were stonewalled. I learned to bury you. Anything was possible. I could fight you. You and my parents made me strong, the physical pain from life's normal upsets meant nothing to me. I concentrated on being the best at school, my uncontrollable mood swings hampered my social life until I conquered that too.
Occasionally throughout my adult life you would dig yourself out of your grave and I would be desperate enough to seek out Dr. Exorcist only to relive the cycle of my youth. Sometimes he would refer me to Mack the Knife, Dr. Pill Happy and Dr. Nightmare. Most of the time this proved to be a bad choice. But, this was back when I didn't realize I had a choice. I was naive enough to believe exorcism always worked and to not obey Dr. Pill Happy was unthinkable.
You taught me to dance between the rain drops. I concentrated on family, college, and a successful career. Once I passed 40, the rain storm started becoming more constant, the space between the drops became smaller and smaller. Until I reached the day when my plodding dance steps were so limited that my family could take it no longer and forcibly placed me in a wheelchair. I learned what it was like to be short and invisible. I had limited cognizance, would blank out (grand mall siezures), lose my balance, get severe flu like symptoms, severe back, shoulder, neck and all over pain and migraines, and the list goes on. I lost my business, some friends, and hold on loving life. I learned what it was like to truly wish for death. I became desperate and even more desperate while the Dr. Mack's argued over the semantics of my illness. This is where I learned that you and I had been together since birth. What a wonderful feeling to have been vindicated and to have been healed! Dr. Mack could be a good guy after all.
I cut you out of my life, but experienced the most devastating blow to discover a month after Dr. Mack's handiwork, while having a wellness celebration or farewell BBQ party about you, that you had an evil twin (according to an unsurprised Dr. Mack the Knife), yet to be named. Fortunately your twin is not identical, but is definitely a Gemini, unpredictable. He's thought to be a rarity.
I can remember the feeling of morning. A bright new day, the delicate warmth of sunshine bathing my face, the sound of birds chirping, a smell and feel of morning air through the crack in the window, the feeling of warmth and strength flowing through my body, the excitement of a whole day ahead of me to attack and enjoy life. It seems like only yesterday that I would take my nature walks with friends, challenging ourselves to exceedingly longer and longer jog-walks each day. Building a sand castle at the beach, standing in the sun watching a parade, going outdoors on a hot sunny day, an outdoor BBQ, going to a day game at the stadium, walking my dog around the block, wandering through the grocery store taking goods off the shelf, standing at the stove long enough to cook something, taking a long drive, playing chase with my little dog, the satisfaction of scrubbing a dirty rental house clean, cleaning my own house, gardening, working as I choose, doing all these things I took for granted would last my lifetime. The excitement of seeing snow on the mountains and planning a ski trip still haunts me. I will never do that again is my slogan for today. Focusing on what I can do is my personal challenge.
Now if I have slept, I wake to the feeling of burning pain everywhere I can feel my body. If I concentrate very hard I can hear a bird chirp over the loud ringing in my head, my nose is too plugged to smell my own bad breath let alone the morning breeze, and if I roll carefully off the bed I may not feel a jolt of excruciating back or leg pain. If I awake with any energy it is a blessing I savour for the few hours it may last. Sometimes I truly dread a walk from here to there. The gentle warmth of the sun has become a seering pain to me that evokes a headache, nausea, stomach pain, and more. I am almost always hot and have flashes burning up all day and night. Feeling cold is a blessing. The heat from the sun can trigger such a violent reaction that even the vision in my right eyes spasms and fails. I live with constant pain, fear of eating the wrong thing, hoping I will be able to sleep when the time comes and counting the physical things I can no longer do as a regrettably growing list. Out of the blue my heart will thump, bump and race for what seems an eternity. The head ringing often becomes loudly unbearable. I have learned to surround myself with noise to keep from going mad. Even worse is the unwanted knowledge about my body that keeps flowing in. I spent a lifetime bearing you and burying you. I spent 20 years trying to find out why these things are happening and now the why's won't stop. The list of diagnoses and pills/things I am allergic too is too long for me to remember. I usually just list the highlights on medical forms. You make me feel like a freak of nature.
Dear John, the evil twin, I want you to move out. I want to hear silence, I want to walk my dog in the sun and build a sand castle at the beach with my granddaughter. I want to hop out of bed and go grocery shopping unassisted. I want to learn to love the things I have learned to hate because of you. I want to go dancing in the evening and clean my house during the day. I want to walk ten miles on a summer day. I want to be able to eat like anyone else and not have pain, gain weight or get sick. I want to be able to toast the New Year. I don't care about my career, it is gone along with my total naivity about humanity. Most of all, I never want to have to see your friends, Dr. Exorcist, Dr. Pill Happy, Dr. Nightmare and Dr. Mack the Knife again as long as I live. I want to feel the morning!
P.S: John, I have often been asked to write about you and to attempt this had caused me to be unbearable to live with for days, but a Dear John letter was a very pleasant task.

Remember.Research is the key to your cure!"

What is a Ferritin Test and why is it import to have it checked when you have Porphyria

Thursday - October 17, 2013 @ 10:48:49

A ferritin test measures the amount of ferritin in your blood. Ferritin is a blood cell protein that contains iron. A ferritin test helps your doctor understand how much iron your body is storing.
If a ferritin test reveals that your blood ferritin level is lower than normal, it indicates your body's iron stores are low and you have iron deficiency.
If a ferritin test shows higher than normal levels, it could indicate that you have a condition that causes your body to store too much iron. It could also point to liver disease, rheumatoid arthritis, other inflammatory conditions or hyperthyroidism. Some types of cancer also may cause your blood ferritin level to be high.
You may have a ferritin test for several reasons:
  • To diagnose a medical condition. Your doctor may suggest a ferritin test if other blood tests have shown that the level of oxygen-carrying protein in your red blood cells (hemoglobin) is low, or if the proportion of red blood cells to the fluid component in your blood (hematocrit) is low. These may indicate that you have iron deficiency anemia. A ferritin test can help confirm that diagnosis.
    A ferritin test may also be used to help diagnose conditions such as hemochromatosis, liver disease and adult Still's disease, among others.
    When used to diagnose a medical condition, a ferritin test may be done in conjunction with an iron test and a total iron-binding capacity (TIBC) and transferrin test. These tests provide additional information about how much iron is in your body.
  • To monitor a medical condition. If you've been diagnosed with a disorder that results in too much iron in your body, such as hemochromatosis or hemosiderosis, your doctor may use a ferritin test to monitor your condition and guide treatment.
  • If your blood sample is being tested only for ferritin, you can eat and drink normally before the test. If your blood sample will be used for additional tests, you may need to fast for a certain amount of time before the test. Your doctor will give you specific instructions.
  • During the ferritin test, a member of your health care team takes a sample of blood by inserting a needle into a vein in your arm. The blood sample is sent to a lab for analysis. You can return to your usual activities immediately.
  • The normal range for blood ferritin is:
    • For men, 24 to 336 nanograms per milliliter (standard units) or 24 to 336 micrograms per liter (international units)
    • For women, 11 to 307 nanograms per milliliter (standard units) or 11 to 307 micrograms per liter (international units)
    Lower than normal results
    A lower than normal ferritin level indicates that you have iron deficiency. You may also be anemic. If your ferritin level is low, your doctor will work to determine the cause.
    Higher than normal results
    A higher than normal ferritin level can be caused by:
    • Hemochromatosis A condition that causes your body to absorb too much iron from the food you eat
    • Porphyria A group of disorders caused by an enzyme deficiency that affects your nervous system and skin
    • Rheumatoid arthritis, adult Still's disease or another chronic inflammatory disorder
    • Liver disease
    • Hyperthyroidism
    • Type 2 diabetes
    • Leukemia
    • Hodgkin's lymphoma
    • Multiple blood transfusions
    If your ferritin level is above normal, your doctor may need to evaluate the results along with those of other tests to determine next steps.
    For specifics about what your ferritin test results mean, talk to your doctor.  Notice in the end it mentions Porphyria.  As an AIP patient myself I have it checked by my Doctor once or twice a year.  So may need it more or less depending on their circumstances so if you have questions print this out and bring to your next Doctors Visit.-Purple LIght
    Rememberâ?¦..Research is the key to your cure!

Important message ~ National Porphyria Registry

Wednesday - October 16, 2013 @ 10:30:04

Important Notice
Porphyria experts have created a National Porphyria Registry-a type of partnership between the porphyria experts and YOU as a way to share information about YOUR health and treatment.  Also, it is the best means to determine the incidence of porphyria and prove that there are enough porphyria patients who want improved health care to warrant government funding.  If we don't speak up, we will be left behind when research grants are presented.    Please join the registry!  
button-join now

Joining the Porphyria Registry is anonymous, and there is no cost to you. All data will be stored in a secure, computerized database. No personal identifying information will be given to anyone without your expressed approval.  Please note that joining the Registry is not the same action as joining the APF. 

To better understand National Registries, you can attend the following webinar on Oct 23, 2013. 

"Remember.Research is the key to your cure!"

Biofeedback & Chronic Pains to Porphyria

Tuesday - October 15, 2013 @ 10:30:04

Biofeedback is a technique you can use to learn to control your body's functions, such as your heart rate. With biofeedback, you're connected to electrical sensors that help you receive information (feedback) about your body (bio). This feedback helps you focus on making subtle changes in your body, such as relaxing certain muscles, to achieve the results you want, such as reducing pain.

Biofeedback helped me greatly when suffering daily pain and Porphyria it may help you ask your Doctor about it.

In essence, biofeedback gives you the power to use your thoughts to control your body, often to help with a health condition or physical performance. Biofeedback is often used as a relaxation technique.

Stress Basics

Sunday - October 13, 2013 @ 14:58:43

Stress basics

By Mayo Clinic staff
Stress is a normal psychological and physical reaction to the ever increasing demands of life. Surveys show that most Americans experience challenges with stress at some point during the year. In looking at the causes of stress, remember that your brain comes hard-wired with an alarm system for your protection. When your brain perceives a threat, it signals your body to release a burst of hormones to fuel your capacity for a response. This has been labeled the "fight-or-flight" response. Once the threat is gone, your body is meant to return to a normal relaxed state. Unfortunately, the nonstop stress of modern life means that your alarm system rarely shuts off.
That's why stress management is so important. Stress management gives you a range of tools to reset your alarm system. Without stress management, all too often your body is always on high alert. Over time, high levels of stress lead to serious health problems. Don't wait until stress has a negative impact on your health, relationships or quality of life. Start practicing a range of stress management techniques today.

AIP my weekend experience as we speak

Saturday - October 12, 2013 @ 12:58:45

So today I thought I would blog about my experience Sat and Sunday Today.

As many of you know I have AIP.  My symptoms change just as the weather changes.  The older I get the different each "Purple People Eater Attack" gets it, it sets me back.  As of late their has been some major problems with getting medications to help me and admitting me into the hospitals even for glucose, and Panhematin.  I don't even ask for pain meds, but these problems we have been at battle again for the last 4 months.

Back to my story,

 So yesterday my day started out so slow, I was sick to my stomach I thought I was hungry so I got my food, not hungry still ate my food.  1/2 hour later in bed sick, just feeling like im going down hill fast, so I take my dogs for a walk to try to block the pain and the feeling I have.  For dinner I went old school good ole fashioned Mac & Cheese that seemed to keep me at bay.  At the same time as I was just pretending nothing was wrong more intense pain came and gone.  Watching the ALCS baseball game game 1 go Tigers!  Then won and went to bed.  My dogs were just watching me through the night and coming up to me, toss and turn, get into the fetal position and my back and legs are on fire, im hot and then its like I progress to be in a no sleep mode.  I wake up to the pain I know its there and cant ignore it, I get ready for my important meeting Sunday morning, evidently could not hold the dinner from last night down not once, twice but three times, i cant think now im in trouble.  I've called the Dr. on a Sunday and left a message with the RN there its a good hospital.  11:30 am im sitting in this meeting and it just comes from the back around the right side like someone stabbing me over and over my head hurts im shaking what do I do in front of 150 people?  I try to ignore it 1/2 later I left the meeting and ate carbs and now im writing in pain.  Do you think anyone notices that im in that much pain I want to cry it hurts so bad, but someone has the nerve and says whats your problem?  I said im not feeling well at that moment I could ring someones neck because they dont understand I dont expect them to but at that moment panic sets in..

So I tell you my honest experience at this very moment that the pain and disease are real, there is a real need for Drs to get together and talk more out of the box about Porphyria and be aware of what needs to be done.  Do what you can to get through it and be determined to get help and quickly.  

     Im still waiting for the two hospitals call me back to get me in so what do I do in the meantime?

Have you been there, live in fear, I could get really angry but what is the point?  I do the best I can during this difficult time and pray it will pass soon.
Keep positive, stay strong endure, I know its not easy and we know what will really help us, my point is to get involved with research projects, listen learn and speak up.

Now back to resting..

Rememberâ?¦..Research is the key to your cure!

Sleeping with Sinus pain & congestion with Porphyria

Wednesday - October 9, 2013 @ 12:56:28

Not sleeping well affects both your body and your mood, but when you have sinus pain and congestion, getting a good nights sleep may be easier said than done.
The sinuses are empty cavities that reside within the cheekbones, around the eyes, and behind the nose. They warm, moisten, and filter air into the nasal cavity. A sinus infection or sinusitis occurs when there is swelling in the nasal sinuses and passages. You may feel symptoms like pressure around the nose, eyes or forehead, a stuffed-up nose, and thick mucus. Some people also report tooth pain with sinusitis. And if you have allergies, you are at greater risk for sinus trouble, according to The American Academy of Allergy, Asthma & Immunology.
There are many reasons that sinus pain and congestion get worse at night. One is that allergies tend to be worse at night, and two, is that when you lie down, your nose becomes more congested, says Jordan S. Josephson, MD, an ear, nose, and throat specialist at Lenox Hill Hospital in New York City and the author of Sinus Relief Now. But this doesnt mean you should give up on a good nights sleep. Instead, try these expert-approved tips to help sleep better with sinus pain and congestion:
1. Take an antihistamine before bed. If you have allergies, taking an antihistamine before bed can help control your sneezing and runny nose, Dr. Josephson says. Some antihistamines make you sleepy in addition to keeping allergy symptoms at bay, so its a win-win. If you use a nasal spray for your allergies, you can try using that at night, too, adds Satish Govindaraj, MD, an assistant professor of otolaryngology at Mount Sinai Hospital in New York City.  Check the Acute Drug Safety List First
2. Make your bedroom a pet-free zone. Allergies can make sinus pain and congestion worse. If you have an allergy to dust mites or to pets, keep your bedroom as free from allergens as possible, says Dr. Govindaraj. Keep your pet out of the bedroom, and consider investing in dust-proof covers for your pillows and comforters.
3. Prop up your head. For congestion relief, sleep with your head elevated on a few pillows and maintain a position where your head is above your heart, suggests Govindaraj. This will decrease blood flow pooling in the nose. Lying flat, by contrast, allows mucus to build up in your sinuses, where it can clog your nasal passages and disrupt sleep.
4. Skip that nightcap. You may think that a glass of wine before you turn in will help with sleep, but that is a myth especially if you have sinus pain and congestion. Alcohol can make you feel congested, especially wine, says Govindaraj. If you are prone to sinus pain or congestion, dont drink alcohol before bed. Alcohol can also leave you feeling dehydrated, which can aggravate sinus pain.
5. Avoid caffeine before bed. This is especially important, Josephson says. Caffeine is a stimulant that will keep you awake, so it makes sense to cut it off before 2 p.m. Also, caffeine is dehydrating, so it will make your sinus pain and congestion worse. Instead, choose water or decaffeinated and herbal teas in the afternoon and evening to quench your thirst.
6. Keep nasal passages moist. During the day, use a simple over-the-counter nasal saline spray to keep nasal passages clear, or rinse your sinuses with a neti pot. At night, using a humidifier can help to avoid drying out the air, especially during the winter, says Sam S. Rizk, MD, a New York City-based ear, nose, and throat doctor and facial plastic surgeon.
7. Keep your bedroom cool and dark. This is good advice for anyone with problems sleeping, including people with sinus pain. Other sleep hygiene tips from the National Sleep Foundation include maintaining a regular bed and wake time (even on weekends), using your bedroom only for sleep and sex, and avoiding any stressful activities before bed.
8. Know when to call the doctor. If you have severe congestion and sinus pain for a week or more and have an accompanying fever, you should see an otolaryngologist [an ear, nose, and throat specialist] because it could be a sign that you have a sinus infection that requires more aggressive treatment, Dr. Rizk says.
By following these tips, you can sleep better and get the congestion relief, but when you have sinus pain and congestion, getting a good nights sleep may be easier said than done.

Rememberâ?¦..Research is the key to your cure!

Discussing AIP with Your Family

Wednesday - October 9, 2013 @ 09:33:38

Discussing AIP with Your Family

For many people, a diagnosis of Acute Intermittent Porphyria (AIP) brings a long journey of not knowing to
an end. But living with AIP begins another journey. Your family can be a key partner in helping you to manage
the disorder. This discussion guide was designed to help you talk about AIP with your family. Here are some
questions you may be asked and some tips for answering those questions.
What is AIP?
Explain to your family that AIP is a rare inherited disorder that involves a lack of one of the enzymes needed
to make heme. Heme is the oxygen-carrying component of red blood cells and is vital for all of the bodys
organs.1 Because it is genetic, your family members may want to think about talking with their doctors about
genetic testing. Also, let them know that many people who are predisposed to the disorder may never
experience an attack.
Why does AIP cause symptoms like pain and muscle weakness?
Your family may already be familiar with the symptoms of the attacks that characterize AIP, particularly if they
have lived with you through an attack. In fact, giving a name to the disorder that has affected you may help
them understand what you have experienced. Explain that an attack is associated with an overproduction and
abnormal buildup of chemicals called porphyrins or porphyrin precursors. These chemicals normally do not
build up in the body. How this leads to specific symptoms is not known.
What can we do?
If your family has been impacted by the symptoms you have experienced, you can empower them by allowing
them to be a part of your AIP management. Tell them about the triggers that may be associated with
attacks. This may be particularly important if members of your family smoke or if part of your family culture
includes drinking alcoholic beverages. Make sure your family understands that severe dieting or carbohydrate
restrictive diets are not advised for people with AIP, because they may stimulate the production of porphyrins.
Is there treatment for AIP?
Because AIP is a condition that can result in sporadic attacks, it is important to think of treatment as a
management plan, rather than as something to be handled solely by being given medication by your doctor.
With the help of your doctor, you may be able to identify certain triggers of attacks which you will want to
address. For example, for some people attacks can be triggered by severe dieting or carbohydrate restrictive
diets or use of some medications.

Rememberâ?¦..Research is the key to your cure!

An amazing life journey with James Beadle and EPP

Friday - October 4, 2013 @ 16:12:03

James Beadles

Type of Porphyria: 
Erythropoietic Protoporphyria (EPP)
I live life with EPP! I was diagnosed when I was six by a dermatologist named Carl Anderson who has since passed away. Up until my diagnosis, my parents had heard it all from a number of doctors. I was allergic to a medicine, or I was allergic to weed killer, to simply saying, "it is just a rash." All the while, I would scream in pain. My parents would help by placing cool clothes on me.
I live in sunny southern California in a beach town. All my friends were into surfing and sailing. The outdoors is part of life in SoCal. I did not let my EPP stop me from enjoying the outdoors though sometimes I paid dearly. I played baseball until high school. I learned to sail. I ran in triathlons and half-marathons. I snow skied and water-skied. I played golf. All the time I endured the funny looks and mean things said about the way I looked and had to dress. I did not let it stop me. Sure, it bothered me when I was young. It hurt. However, as I got older I saw it as other people's problem, not mine. I was living my life the best way I knew how. I was not going to let EPP stop me from enjoying life.
I had a doctor once who told my parents I should move to Seattle where it was cloudy more often. He said I should learn to play chess and ping-pongindoor sports instead of baseball and golf and sailing. My parents would hear nothing of it; they knew I was going to live my life the way I wanted to live.
I have had two liver transplants because of my EPP. The porphyrins dumped into the liver and made it cirrhotic. I had my first transplant when I was 27 years old. The liver lasted 12 years, during which I was able to continue my normal active lifestyle. I married and had two kids. Neither of my kids shows symptoms of EPP.  In fact, one wants to be a lifeguard!  Both of my children can run around on the beach all day without being burned, well, aside from basic sunburn. Their mother and I lather them with sunscreen when they go out to the beach or are playing soccer or swimming. The boys are six and eight and I am confident they do not have EPP.
My second transplant was more dramatic. I was 39, my liver and kidneys failed, and I went into a coma. I was transplanted three weeks later and subsequently spent the next eight months in UCLA Medical Center. I was on dialysis for six months after which by some miracle my kidneys began to work again. The transplant and hospitalization took a great toll on my body. I am no longer able to be as active as I was. I have neuropathy in my feet from the kidney failure and nerve damage from being in bed for so long. I am twenty pounds underweight and weak. I like to joke that I am a 42-year old living in a 92-year-old body. I still live with the EPP and who knows how long this liver will last. I take infusions of Panhematin to slow the progression of porphyrins into the liver (this is the hope anyway). The key is I am still living.
I still endure the looks from people, like the other parents at the soccer field when I watch my kids play. I do not care if they think it is odd someone wearing long pants, long sleeves and gloves on a 90-degree SoCal day. To me, they have a problem, not me. People do what they have to do to cope. I am not going to let EPP keep me from enjoying my life and enjoying watching my kids grow up. My kids understand that Dad has to be careful of the sun. They understand Dad is not as strong as he once was because of his surgery. They understand why Dad has to wear protective clothing in the pool; they are just happy that Dad is in the pool with them! Grown-ups should be so understanding.
I hope you enjoy my story and I am anxious to hear how others with EPP are LIVING, not just coping or suffering. Someday there will be a cure for this, and I plan on being around to see it!

Rememberâ?¦..Research is the key to your cure!

Fall Time

Thursday - October 3, 2013 @ 11:45:39

Have a happy fall- fun- filled weekend to everyone!

Rememberâ?¦..Research is the key to your cure!

Porphyria and background resources

Tuesday - October 1, 2013 @ 14:07:50


Porphyria is named from the ancient Greek word porphura, meaning purple.[1] Porphyrins are precursors of heme, a part of the hemoglobin molecule. Heme is manufactured in a multistep process. Defects of enzymes needed at various steps of heme synthesis result in distinct clinical syndromes known as porphyrias. These syndromes can be clinically classified into those predominantly involving the skin, those manifesting as disorders of the liver/nervous system, and a combination involving all 3 entities (see the image below).
Clinical classification of porphyrias. Clinical classification of porphyrias. Porphyrias can be inherited or (rarely) acquired.[2] With the exception of congenital erythropoietic porphyria (CEP), which is autosomal recessive, all other porphyrias are inherited as autosomal dominant disorders. They invariably result in accumulation and increased excretion of porphyrins and their precursors. Some porphyrias have acute presentations (acute intermittent, variegate, hereditary coproporphyria), whereas others have a chronic, relatively stable presentation (congenital, erythropoietic).[3]
King George III of England had symptoms of abdominal pain, rashes, reddish urine, and psychotic episodes that are consistent with porphyria, although the account is disputed by many.[4] During the period 1955-1959, approximately 4000 people in southeast Anatolia (Turkey) developed porphyria due to the ingestion of hexachlorobenzene (HCB), a fungicide that was added to wheat seedlings.[5]

  1. Lane N. Born to the purple: the story of porphyria. Scientific American [serial online]. December 16, 2002;Accessed September 30, 2009. Available at
  2. Champe PC, Harvey RA, eds. Conversion of amino acids to specialized products. Biochemistry. 2nd ed. Philadelphia, Pa: Lippincott, Williams & Wilkins; 1994:260-1.
  3. Forbes CD, Jackson WF, eds. Endocrine, metabolic and nutritional. Color Atlas and Text of Clinical Medicine. 2nd ed. Barcelona, Spain: Times Mirror International / Mosby; 1997:349.
  4. Cooper J. King George's illness -- porphyria. Queen Charlotte, 1744-1818: A Bilingual Exhibit. Available at Accessed February 4, 2008.
  5. Gocmen A, Peters HA, Cripps DJ, Bryan GT, Morris CR. Hexachlorobenzene episode in Turkey. Biomed Environ Sci. Mar 1989;2(1):36-43. [Medline].
  6. Poblete-Gutierrez P, Badeloe S, Wiederholt T, Merk HF, Frank J. Dual porphyrias revisited. Exp Dermatol. Sep 2006;15(9):685-91. [Medline]. [Full Text].
  7. Canavese C, Gabrielli D, Guida C, Cappellini MD. [Nephrologists and porphyrias] [Italian]. G Ital Nefrol. Jul-Aug 2002;19(4):393-412. [Medline].
  8. Doss MO, Stauch T, Gross U, et al. The third case of Doss porphyria (delta-amino-levulinic acid dehydratase deficiency) in Germany. J Inherit Metab Dis. 2004;27(4):529-36. [Medline].
  9. Hedger RW, Wehrmacher WH, French AV. Porphyria syndrome associated with diabetic nephrosclerosis and erythropoietin. Compr Ther. 2006;32(3):163-71. [Medline].

    Rememberâ?¦..Research is the key to your cure!

Series: Porphyria life my Journey ~ Part 1

Friday - September 27, 2013 @ 17:15:56

Choices, decisions, what medications should I take, why do I have to see the Doctor for that matter what kind of Doctor do I need to see and why?  This porphyria disease has me really worried

      What do I say to to Doctor how do I describe what I feel.  
Do I share the emotional side of it the physical side what it does to me, I know I can do this but right now,  I'm not feeling good at all.  
 I have to face a new staff and new doctor, will they listen? will they care?  Have they ever heard of this disease?  Will they understand and listen to me.  I'm so scared, nervous and sick.

Where do I begin??????????  Has this ever happened to you?  I really would like your input I will be writing a short series weekly so that we can discuss things on this blogs.  Many of these questions we have all faced and the worries that go along with it.  

So please take some time to really think about this stage maybe it was so long ago, maybe your new with this, maybe your waiting and don't know if you have it.  I will be sharing my personal struggles, feelings and journey so far.  So please take some time to think, ask questions and contribute to this because we succeed as a group not alone.   

Please share your type, experience in this part above next week- How to pick the right doctor to care for me and why

Amy Chapman 39 and I have AIP
Rememberâ?¦..Research is the key to your cure!

Questions from Facebook and U.S. Porphyria Labs

Friday - September 27, 2013 @ 17:12:59

Many of you have also FB and ask where to send your labs to here is some additional Information for you and your healthcare team.

U.S. Porphyria labs

There are only a few laboratories in the United States that can perform the complex analysis to diagnose Porphyria. The laboratories listed with a ** are overseen by a Porphyria expert who can consult with your physician about your test results. It is always best to have your doctor's office call the laboratory before sending samples to verify collection and shipping instructions.
University of Texas Medical Branch**Porphyria Center
Dr. Karl Anderson
RT-J 09 Ewing Hall
Galveston, TX 77550
(409) 772-4661
ARUP Laboratories**
University of Utah

500 Chipeta Way
Salt Lake City, UT 84108
(801) 583-2787
Fairview University Diagnostic Laboratories
University Campus, Mayo Bldg., Room D-293
420 Delaware Street SE (UH-198)
Minneapolis, MN 55455
Please note: This lab does urine tests on site; blood and stool samples are sent out to the University of Texas, Galveston Porphyria Laboratory for testing and interpretation.
Mount Sinai Medical Center**
Department of Human Genetics

Dana Doheny, MS, CGC, Genetic Counselor
Porphyria DNA Testing Laboratory
Department of Human Genetics & Genomic Sciences
Mount Sinai School of Medicine
1425 Madison Avenue, Room 14-74, Box 1498
New York, NY 10029-6574
Tel: (212) 659-6779
DNA testing for six porphyrias: AIP, HCP, VP, f-PCT, EPP, CEP
Quest Diagnostics
33608 Ortega Highway
San Juan Capistrano, CA 92690
(800) 642-4657
Mayo Medical LaboratoriesTel: (800) 533-1710 or (507) 266-2888
Fax: (507) 266-2888
Please note: The physician or hospital ordering the tests should phone ahead to the laboratory before ordering tests or shipping samples. Telephone consultation is provided to health care professionals only.  Direct patient consultation is not provided over the telephone.

Rememberâ?¦..Research is the key to your cure!

Back by Popular Demand! Directions For Collecting A 24-Hour Urine Sample

Friday - September 27, 2013 @ 13:46:37

Directions For Collecting A 24-Hour Urine Sample

Many, many of you have been private messaging me about the proper way to collect for your 24 hour urine sample please use this handout for the labs and with your Doctor.
Many members have asked about the proper way to collect a 24-hour urine. Here are the directions from one Porphyria laboratory. You might want to compare these directions with those from your own laboratory.
  1. Please use a dark plastic jug for collecting the urine. The urine should be protected from light during collection and during shipping. Add 5 grams of sodium carbonate, a powder that will readily dissolve in the urine, to the jug. This adjusts the acidity of the urine and helps preserve the substances the lab will be measuring. It is not toxic or irritating.
  2. A 24-hour urine collection must be started at a specific time and then ended at the same time the next day. You can choose any time that is convenient for you to start the collection. But you must also be sure that you can end the urine collection at the same time the next day.
  3. Record the time that you have chosen to start the collection. You need to start the urine collection with an empty bladder. Therefore, at exactly this time, empty your bladder and discard the urine. In other words, when you start the urine collection, you should empty your bladder and not add that urine to the jug.
  4. From that time on, add any urine that you pass to the jug. You do not need to record the time each time you urinate.
  5. During the collection, store the urine jug tightly capped in a refrigerator or place it in an ice chest.
  6. Exactly 24 hours after you start the urine collection, you should end the urine collection by emptying your bladder into the jug for the last time.
The University of Texas Medical Branch Porphyria Lab primer on testing for Porphyria is available here:

Rememberâ?¦..Research is the key to your cure!

A Poem~ If you could live in my body

Tuesday - September 24, 2013 @ 15:48:17

If you could live in my body


If you could live in my body,
just for a day,
maybe you wouldnt think
that I feel okay.
You might understand
what its like to be tired
by just trying to live,
just doing whats required.
If you could live in my body
you might begin to see,
that a simple drug
wont set me free.
If you could live in my skin
youd learn to understand
that its not in my head,
nor was it planned.
I dont want your pity
or to make you resent.
But I dont need to apologize,
or have your consent.
I am sick and Im tired
every single day,
and it wont help to ignore it.
So listen when I say:
it helps when I relax
with a friend and some tea.
You cant understand
but please, believe me.

Submitted by Beth Turner

Rememberâ?¦..Research is the key to your cure!

Welcome notes.

Tuesday - September 24, 2013 @ 15:40:07

Welcome all new friends and family to the American Porphyria FB groups. We so happy that you can join us. Please take some time to take a look at the following sites to help you become more familiar with Porphyria by visiting 

You can also join the Purple Light Blog to receive stories, tips and information on how others cope with porphyria @ 

You can also call the APF@ 1-866-APF-3635 or their email is

Rememberâ?¦..Research is the key to your cure!

Key Facts About Seasonal Flu Vaccine

Friday - September 20, 2013 @ 10:30:00

Key Facts About Seasonal Flu Vaccine

Visit 2013-2014 Season: What You Should Know for flu and flu vaccine information specific to the 2013-14 flu season.
The single best way to protect against the flu is to get vaccinated each year.

Flu Vaccination

Why should people get vaccinated against the flu?

Influenza is a serious disease that can lead to hospitalization and sometimes even death. Every flu season is different, and influenza infection can affect people differently. Even healthy people can get very sick from the flu and spread it to others. Over a period of 31 seasons between 1976 and 2007, estimates of flu-associated deaths in the United States range from a low of about 3,000 to a high of about 49,000 people. During a regular flu season, about 90 percent of deaths occur in people 65 years and older. The seasonal flu season in the United States can begin as early as October and last as late as May.
During this time, flu viruses are circulating in the population. An annual seasonal flu vaccine (either the flu shot or the nasal-spray flu vaccine) is the best way to reduce the chances that you will get seasonal flu and spread it to others. When more people get vaccinated against the flu, less flu can spread through that community.

How do flu vaccines work?

Flu vaccines (the flu shot and the nasal-spray flu vaccine (LAIV)) cause antibodies to develop in the body about two weeks after vaccination. These antibodies provide protection against infection with the viruses that are in the vaccine.
The seasonal flu vaccine protects against the influenza viruses that research indicates will be most common during the upcoming season. Traditional flu vaccines (called trivalent vaccines) are made to protect against three flu viruses; an influenza A (H1N1) virus, an influenza A (H3N2) virus, and an influenza B virus. In addition, this season, there are flu vaccines made to protect against four flu viruses (called quadrivalent vaccines). These vaccines protect against the same viruses as the trivalent vaccine as well as an additional B virus.

What kinds of flu vaccines are available?

There are several flu vaccine options for the 2013-2014 flu season.
Traditional flu vaccines made to protect against three different flu viruses (called trivalent vaccines) are available. In addition, this season flu vaccines made to protect against four different flu viruses (called quadrivalent vaccines) also are available.
The trivalent flu vaccine protects against two influenza A viruses and an influenza B virus. The following trivalent flu vaccines are available:
The quadrivalent flu vaccine will protect against two influenza A viruses and two influenza B viruses. The following quadrivalent flu vaccines will be available:
(*Healthy indicates persons who do not have an underlying medical condition that predisposes them to influenza complications.)
CDC does not recommend one flu vaccine over the other. The important thing is to get a flu vaccine every year.

Are any of the available flu vaccines recommended over others?

No. CDC does not recommend one flu vaccine over another. This includes deciding between trivalent or quadrivalent vaccine or between injection (the flu shot) or nasal spray vaccine. The important thing is to get a flu vaccine every year. Talk to your doctor or nurse about the best options for you and your loved ones.

Who should get vaccinated this season?

Everyone who is at least 6 months of age should get a flu vaccine this season. This recommendation has been in place since February 24, 2010 when CDCs Advisory Committee on Immunization Practices (ACIP) voted for universal flu vaccination in the United States to expand protection against the flu to more people.
While everyone should get a flu vaccine this season, its especially important for some people to get vaccinated.
Those people include the following:
  • People who are at high risk of developing serious complications (like pneumonia) if they get sick with the flu.
  • People who live with or care for others who are at high risk of developing serious complications.
    • Household contacts and caregivers of people with certain medical conditions including asthma, diabetes, and chronic lung disease.
    • Household contacts and caregivers of infants less than 6 months old.
    • Health care personnel.
More information is available at Who Should Get Vaccinated Against Influenza.

Special Consideration Regarding Egg Allergy:

People who have ever had a severe allergic reaction to eggs, or who have a severe allergy to any part of this vaccine, may be advised not to get vaccinated. People who have had a mild reaction to eggthat is, one which only involved hivesmay receive the flu shot with additional precautions. Make sure your healthcare provider knows about any allergic reactions. Most, but not all, types of flu vaccine contain small amount of egg.

Who Should Not Be Vaccinated?

There are some people who should not get a flu vaccine without first consulting a physician. These include:
  • People who have had a severe reaction to an influenza vaccination.
  • Children younger than 6 months of age (influenza vaccine is not approved for this age group), and
  • People who have a moderate-to-severe illness with or without a fever (they should wait until they recover to get vaccinated.)
  • People with a history of GuillainBarré Syndrome (a severe paralytic illness, also called GBS) that occurred after receiving influenza vaccine and who are not at risk for severe illness from influenza should generally not receive vaccine. Tell your doctor if you ever had Guillain-Barré Syndrome. Your doctor will help you decide whether the vaccine is recommended for you.

When should I get vaccinated?

Flu vaccination should begin soon after vaccine becomes available, ideally by October. However, as long as flu viruses are circulating, vaccination should continue to be offered throughout the flu season, even in January or later. While seasonal influenza outbreaks can happen as early as October, most of the time influenza activity peaks in January or later. Since it takes about two weeks after vaccination for antibodies to develop in the body that protect against influenza virus infection, it is best that people get vaccinated so they are protected before influenza begins spreading in their community.
Flu vaccine is produced by private manufacturers, so availability depends on when production is completed. Shipments began in late July and August and will continue throughout September and October until all vaccine is distributed.

Where can I get a flu vaccine?

Flu vaccines are offered in many locations, including doctors offices, clinics, health departments, pharmacies and college health centers, as well as by many employers, and even in some schools.
Even if you dont have a regular doctor or nurse, you can get a flu vaccine somewhere else, like a health department, pharmacy, urgent care clinic, and often your school, college health center, or work.
The following Vaccine LocatorExternal Web Site Icon is a useful tool for finding vaccine in your area.

Why do I need a flu vaccine every year?

A flu vaccine is needed every year because flu viruses are constantly changing. Its not unusual for new flu viruses to appear each year. The flu vaccine is updated annually to keep up with the flu viruses as they change.
Also, multiple studies conducted over different seasons and across vaccine types and influenza virus subtypes have shown that the bodys immunity to influenza viruses (acquired either through natural infection or vaccination) declines over time.

Does flu vaccine work right away?

No. It takes about two weeks after vaccination for antibodies to develop in the body and provide protection against influenza virus infection. Thats why its better to get vaccinated early in the fall, before the flu season really gets under way.

Can I get seasonal flu even though I got a flu vaccine this year?

Yes. There is still a possibility you could get the flu even if you got vaccinated. The ability of flu vaccine to protect a person depends on various factors, including the age and health status of the person being vaccinated, and also the similarity or match between the viruses used to make the vaccine and those circulating in the community. If the viruses in the vaccine and the influenza viruses circulating in the community are closely matched, vaccine effectiveness is higher. If they are not closely matched, vaccine effectiveness can be reduced. However, its important to remember that even when the viruses are not closely matched, the vaccine can still protect many people and prevent flu-related complications. Such protection is possible because antibodies made in response to the vaccine can provide some protection (called cross-protection) against different but related influenza viruses. For more information about vaccine effectiveness, visitHow Well Does the Seasonal Flu Vaccine Work?

Vaccine Effectiveness

Influenza vaccine effectiveness (VE) can vary from year to year and among different age and risk groups. For more information about vaccine effectiveness, visit How Well Does the Seasonal Flu Vaccine Work? For information specific to this season, visit About the Current Flu Season.

Will this season's vaccine be a good match for circulating viruses?

It's not possible to predict with certainty which flu viruses will predominate during a given season. Over the course of a flu season, CDC studies samples of flu viruses circulating during that season to evaluate how close a match there is between viruses used to make the vaccine and circulating viruses. Data are published in the weekly FluView. In addition, CDC conducts studies each year to determine how well the vaccine protects against illness during that season. The results of these studies are typically published following the conclusion of the flu season and take into consideration all of the data collected during the season. Interim studies also may be conducted that provide preliminary estimates of the vaccines benefits that season using data available at that time. For more information, see Vaccine Effectiveness How Well Does the Flu Vaccine Work?
Flu viruses are constantly changing (called antigenic drift) they can change from one season to the next or they can even change within the course of one flu season. Experts must pick which viruses to include in the vaccine many months in advance in order for vaccine to be produced and delivered on time. (For more information about the vaccine virus selection process visit Selecting the Viruses in the Influenza (Flu) Vaccine.) Because of these factors, there is always the possibility of a less than optimal match between circulating viruses and the viruses in the vaccine.

Can the vaccine provide protection even if the vaccine is not a "good" match?

Yes, antibodies made in response to vaccination with one flu virus can sometimes provide protection against different but related viruses. A less than ideal match may result in reduced vaccine effectiveness against the virus that is different from what is in the vaccine, but it can still provide some protection against influenza illness.
In addition, even when there is a less than ideal match or lower effectiveness against one virus, it's important to remember that the flu vaccine may protect against the other flu viruses included in the vaccine.
For these reasons, even during seasons when there is a less than ideal match, CDC continues to recommend flu vaccination. This is particularly important for people at high risk for serious flu complications, and their close contacts.

Vaccine Side Effects (What to Expect)

Can the flu vaccine give me the flu?

No, a flu vaccine cannot cause flu illness. Flu vaccines that are administered with a needle are currently made in two ways: the vaccine is made either with a) flu vaccine viruses that have been inactivated and are therefore not infectious, or b) with no flu vaccine viruses at all (which is the case for recombinant influenza vaccine). The nasal spray flu vaccine does contain live viruses. However, the viruses are attenuated (weakened), and therefore cannot cause flu illness. The weakened viruses are cold-adapted, which means they are designed to only cause infection at the cooler temperatures found within the nose. The viruses cannot infect the lungs or other areas where warmer temperatures exist.
Different side effects can be associated with the flu shot and nasal spray flu vaccines. These side effects are mild and short-lasting, especially when compared to symptoms of influenza infection.
The flu shot: The viruses in the flu shot are killed (inactivated), so you cannot get the flu from a flu shot. Some minor side effects that could occur are:
  • Soreness, redness, or swelling where the shot was given
  • Fever (low grade)
  • Aches
The nasal spray: The viruses in the nasal spray vaccine are weakened and do not cause severe symptoms often associated with influenza illness. In children, side effects from the nasal spray can include:
  • Runny nose
  • Wheezing
  • Headache
  • Vomiting
  • Muscle aches
  • Fever
In adults, side effects from the nasal spray vaccine can include
  • Runny nose
  • Headache
  • Sore throat
  • Cough
If these problems occur, they begin soon after vaccination and are mild and short-lived. Almost all people who receive influenza vaccine have no serious problems from it. However, on rare occasions, flu vaccination can cause serious problems, such as severe allergic reactions. People who think that they have been injured by the flu shot can file a claim for compensation from theNational Vaccine Injury Compensation Program (VICP)External Web Site Icon.
More information about the safety of flu vaccines is available at Influenza Vaccine Safety.

Vaccine Supply and Distribution

How much vaccine will be available during 2013-2014?

Manufacturers have projected that they will produce between 135 million and 139 million doses of influenza vaccine for use in the United States during the 2013-2014 influenza season. An estimated 30 million to 32 million of these doses will be quadrivalent flu vaccine. The rest will be trivalent flu vaccine.

Where can I find information about vaccine supply?

Information about vaccine supply is available on the CDC influenza web site.

Why do manufacturers and distributors take a phased approach to vaccine distribution?

Influenza vaccine production begins as early as 6-9 months before the beginning of vaccine distribution. Even with this early start, it isnt possible to complete the entire production and distribution process prior to flu season, particularly given the limited number of influenza vaccine manufacturing plants in the United States and the large number of doses that are produced each year. Instead, influenza vaccine distribution takes place in a phased fashion over a number of months. It begins in late summer for some manufacturers and vaccine products and usually completes near the end of November or early in December. This system can leave doctors and other vaccine providers with uncertainty about when they can expect to receive their full order of vaccine and can make it difficult for them to plan their vaccination activities. Manufacturers and distributors try to get some vaccine to as many providers as possible as early as possible so that they can begin vaccinating their patients.

What role does the Department of Health and Human Services play in the supply and distribution of the seasonal influenza vaccine?

Influenza vaccine production and distribution are primarily private sector endeavors. The Department of Health and Human Services and CDC do not have the authority to control influenza vaccine distribution nor the resources to manage such an effort. However, the Department has made significant efforts to enhance production capacity of seasonal influenza vaccines, including supporting manufacturers as they invest in processes to stabilize and increase their production capacity.
Rememberâ?¦..Research is the key to your cure!

Why have a patient advocate! Important!

Thursday - September 19, 2013 @ 16:20:47

A time of illness is a stressful time for patients as well as for their families. The best-laid plans can go awry,
judgment is impaired, and, put simply, you are not at your best when you are sick. Patients need
someone who can look out for their best interests and help navigate the confusing healthcare system -
in other words, an advocate.
What is a patient advocate?
An advocate is a supporter, believer, sponsor, promoter, campaigner, backer, or spokesperson. It is
important to consider all of these aspects when choosing an advocate for yourself or someone in your
family. An effective advocate is someone you trust who is willing to act on your behalf as well as
someone who can work well with other members of your healthcare team such as your doctors and
An advocate may be a member of your family, such as a spouse, a child, another family member, or a
close friend. Another type of advocate is a professional advocate. Hospitals usually have professionals
who play this role called Patient Representatives or Patient Advocates. Social workers, nurses and
chaplains may also fill this role. These advocates can often be very helpful in cutting through red tape. It
is helpful to find out if your hospital has professional advocates available, and how they may be able to
help you.
Using an advocate getting started
â?¢ Select a person you can communicate with and that you trust. Its important to pick someone who is assertive and who has good communication skills. Make sure that the person you select is willing and able to be the type of advocate that you need.
â?¢ Decide what you want help with and what you want to handle on your own. For example, you may want help with:
o Clarifying your options for hospitals, doctors, diagnostic tests and procedures or treatment choices
o Getting information or asking specific questions
o Writing down information that you receive from your caregivers, as well as any questions that you may have
o Assuring that your wishes are carried out when you may not be able to do that by yourself.
â?¢ Decide if you would like your advocate to accompany you to tests, appointments, treatments and procedures. If so, insist that your doctor and other caregivers allow this.
â?¢ Be very clear with your advocate about what you would like them to know and be involved inTreatment decisions? Any change in your condition? Test results? Keeping track of medications?
â?¢ Let your physician and those caring for you know who your advocate is and how you want them involved in your care
â?¢ Arrange for your designated advocate to be the spokesperson for the rest of your family and make sure your other family members know this. This will provide a consistent communication link for your caregivers and can help to minimize confusion and misunderstandings within your family.
â?¢ Make sure your doctor and nurses have your advocates phone number and make sure your advocate has the numbers for your providers, hospital and pharmacy, as well as anyone else you may want to contact in the case of an emergency.
National Patient Safety Foundation â?¢ 268 Summer Street, Sixth Floor, Boston, MA 02210
(617) 391-9900 � � © 2003

Rememberâ?¦..Research is the key to your cure!

Tom Collier and his Life with EPP

Saturday - September 14, 2013 @ 10:30:01

Tom Collier

Type of Porphyria: 
Erythropoietic Protoporphyria (EPP)
Tom Collier with wife, NancyTom Collier and his brother both suffered the symptoms of Erythropoietic Protoporphyria nearly all their lives, but until recently they had no explanation for their photosensitivity.  Diagnosis finally came when Tom was 64 years old, after a lifetime searching for answers.
As far back as he can remember, Toms problems in the sun started when he was three years old.  He remembers running around screaming after being in the sun, and having a horrible stinging, burning pain all over his hands, arms and legs. Toms parents took him to a variety of doctors throughout the 1940s and 50s to diagnose his problem, but like many children with EPP he had no visible symptoms at all.  He didnt swell up, and he didnt get red, his parents just knew he was suffering from terrible pain when he went out of doors.
Tom finally heard of porphyria when his brother caught mention of the disease a little more than five years ago and thought the description matched both of their symptoms.  Tom started hitting websites and decided that EPP fit the bill for the problems hed had all his life.  He says:  nothing else came close.  Looking for a doctor who could help him, he found Dr. Micheline Mathews-Roth, a dermatologist and EPP expert in Massachusetts, and Dr. Joseph Bloomer, a hepatologist and EPP liver expert in Alabama.  Both doctors have studied porphyria both in patients and in the laboratory for more than 30 years and have served on the APF Scientific Advisory Board since its inception.
Dr. Bloomer ordered lab tests and sent them to the porphyria center at the University of Texas Medical Branch in Galveston, where Dr. Andersons lab quickly made the diagnosis of EPP.  Shortly afterwards Tom called Dr. Roth in Massachusetts and spoke with her at length.  He had the FEP test (one of several recommended annually for people with EPP) and now has a general practitioner who has two other patients with porphyria.
A lifetimes worth of severe sensitivity to the sun had already taught Tom to be careful, so by the time he was diagnosed he was already used to covering up outside, and not spending a lot of time out of doors in the daylight hours.  He says when he first sets foot outdoors the sun feels warm on his skin, just like it does for anybody else.  But before long his skin becomes just a little bit uncomfortable, and thats his signal that its time to get indoors right away.  After the discomfort comes the prickling, stinging, burning pain that is familiar to those with EPP.
Stepping into the shade when he is unavoidably out of doors is helpful to Tom, but he does get EPP symptoms from indirect light as well and unfortunately his symptoms are triggered more quickly on exposure to light than they once were.  Indoors, he feels the sting of fluorescent bulbs (like the kind used in most stores and hospitals), and incandescent bulbs bother him somewhat too.
These days Tom is thinking about having photoprotective window films installed on the glass in his home.  When hes out driving, Tom wears long-sleeved shirts and gloves at all times.
It is very easy for porphyria patients, or those with any rare disease, to become impatient with the pace of medicine and the lack of a cure.  But keep in mind how far weve come in the past 70 years:  from a little boy who screamed in pain and whose parents could find no answers, to a name for the disease, a clear genetic marker for it, and a straightforward diagnostic procedure for ferreting it out.  Porphyria patients today owe a tremendous debt not only to the doctors who worked with little recognition and no reward to discover the biological secrets of the disease, but to patients like Tom as well, whose experience helped doctors learn, to all of our benefit.
Rememberâ?¦..Research is the key to your cure!

What is HEP?

Friday - September 13, 2013 @ 10:30:01

Hepatoerythropoietic Porphyria (HEP)

This very rare type of Porphyria is also due to a deficiency of uroporphyrinogen decarboxylase (UROD). The enzyme deficiency is inherited as an autosomal recessive trait. The manifestations of HEP resemble CEP, with symptoms of skin blistering usually beginning in infancy. Porphyrins are increased in bone marrow and red blood cells, in contrast to PCT, as well as liver, plasma, urine and feces.

Rememberâ?¦..Research is the key to your cure!

Need more Z Z Z's?

Wednesday - September 11, 2013 @ 10:30:01

Depression and Sleep: Getting the Right Amount

Lack of sleep can upset your biologic clock and make your depression worse. At the same time, depression can influence your sleeping habits.

A change in your sleep habits is one of the most common effects ofdepression. Lack of sleep can start before depression, be a symptom of depression, and make depression worse.
"Depression and sleep are closely related," says Prashant Gajwani, MD, associate professor and vice chairman of clinical affairs in the department of psychiatry and behavioral sciences at the University of Texas Medical School in Houston. "Depression is a brain illness, and it affects many types of brain functions, including the sleep-wake cycle. Once this biologic clock has been disturbed, it can make sleep even more irregular and that adds to the depression. It can become a vicious cycle for many people."
Effects of Depression on Sleep
People with depression commonly experience disturbed sleep patterns, but the way depression affects sleep varies widely.
"Difficulty getting enough sleep is a major symptom for most people with depression, but for about 10 to 20 percent of people, the effects of depression result in sleeping too much," says Dr. Gajwani. Depression commonly causes:
  • Difficulty falling asleep
  • Difficulty staying asleep
  • Waking up early in the morning
  • Oversleeping
  • Sleeping during the day
  • Poor quality of sleep
  • Waking up feeling tired

Effects of Sleep on Depression
The amount of restful sleep you are getting can affect your emotional health. "Lack of sleep for a long enough time can cause depression," says Gajwani. Although it is unlikely that lack of sleep alone is responsible for most cases of depression, it may contribute to depression in some people. The fact that many people who have sleep problems develop depression may indicate that sleep disorders and depression have similar causes or risk factors. Links between depression and sleep have been found in many studies, for example:
  • Research shows that people with insomnia have a 10-fold higher risk of developing depression.
  • Other types of sleep-related disorders, like obstructive sleep apnea and restless leg syndrome, are associated with high rates of depression. For people with obstructive sleep apnea, depression often improves with apnea treatment.
  • Research shows that children with depression who experience a lack of sleep or who sleep too much are more likely to have longer and more severe episodes of depression.
  • Experts suspect that chronic lack of sleep caused by physical illness is one reason older people have higher rates of depression.

Tips for a Good Night's Sleep
If youre having a hard time sleeping at night or you are sleeping away too much of the day, following some healthy sleep habits may help. To start, set a bedtime schedule. "It is very important for people with a history of depression to keep regular hours of sleep, says Gajwani. You should go to bed about the same time and get up about the same time, and use your bedroom only for sleep or sex." Here are some other tips to sleep by:
  • Exercise. "Make sure to get regular exercise and spend some time outdoors in the sunlight every day. This is a good way to set your biologic clock, and it helps maintain a regular sleep-wake cycle," says Gajwani.
  • Skip the nap. Avoid afternoon naps, which can lead to nighttime insomnia.
  • Limit caffeine and alcohol, especially later in the day.Caffeine is a stimulant and can keep you wide awake, while alcohol can disrupt sleep quality. "Alcohol before bedtime will interfere with sleep, warns Gajwani. It may help you fall asleep, but you are less likely to sleep through the night."
  • Get up if you cant sleep. "Don't waste time lying in bed looking at your clock," says Gajwani. If you find yourself lying awake, the best thing is to get up and do something relaxing until you feel tired.
  • Shut off the TV. "Avoid watching television late at night. Most shows in the evening are too stimulating and do not promote good sleep, says Gajwani. It's better to read a book or do a relaxing activity in the hours before bed."
  • Practice good sleep hygiene. This includes using your bedroom primarily for sleeping and sticking to a regular sleep schedule. Avoid distractions in your bedroom, like phones, computers, too much light, and too much noise. Make sure your bed is comfortable and that the room temperature is comfortable for sleeping.

Changes in sleep patterns can be an effect of depression or an early warning sign of it. Let your doctor know if you are not able to sleep or if you are sleeping too much. "Over-the-counter sleep aids are not a good solution for people with depression and sleep problems, says Gajwani. Practice good sleep hygiene, get regular exercise, and work with your doctor or therapist to get your depression under control." Taking care of yourself, including getting the right amount of restful sleep, can help you manage your depression.
Sweet dreams everyone!

Rememberâ?¦..Research is the key to your cure!

American Porphyria Foundation Media News

Tuesday - September 10, 2013 @ 10:30:01

Even for some of the best minds in medicine, porphyria can be puzzlement. When porphyria is unrecognized, patients are often given medications that worsen their condition, undergo multiple unnecessary and dangerous surgeries, or suffer permanent skin damage, severe liver disease or other complications that could be avoided if the disease were better recognized.
Porphyria is known as "the little imitator," because it mimics so many more common conditions. Acute porphyria has been called the "Tic-tac-toe disease," because before the advanced imaging technologies (C/T, MRI, ultrasound) we have today were developed, doctors would perform multiple surgeries in search of the source of a patients abdominal pain, leaving scars in the shape of a Tic-tac-toe game.
Different types of porphyria (and its misdiagnoses) have been featured on Discovery Health's Mystery Diagnosis, and on dramas like House, CSI, and ER. Patient stories have been covered in publications ranging from Ladies' Home Journal to online sports news outlets.  There are works of popular fiction and non-fiction about porphyria, notably Isabel Allende's memoir, Paula, written while the authors daughter lay in a coma brought on by an acute attack.
The APF welcomes media attention to these fascinating and troubling diseases. If you are a member of the media, we hope you will use the information you find here in your stories, and we ask that you credit the American Porphyria Foundation as your source. We encourage you to share our website address,, and our toll-free telephone number, 1-866-APF-3635, with your audience as well.
Please call our office for additional information.

Porphyria in the Media

"Perplexing Pain," a mysterious case story of acute porphyria from the New York Times, Sunday Magazine November 1, 2009. (Page 1Page 2)
"Rare genetic disorder doesn't slow down boys," two brothers in a small Texas town deal with erythropoietic protoporphyria (EPP) from the Vernon Daily Record April 9, 2010. (12,3)
"The Mystery Illness" of Congenital Erythropoietic Protoporphyria (CEP) on Dr. Dean Edell's Medical Journal, ABC-TV 1986. (on
Please contact us for a complete listing of print, radio and television features. 1-866-apf-3635

Rememberâ?¦..Research is the key to your cure!

Fundraiser or Special Event Volunteer

Monday - September 9, 2013 @ 16:06:43

Fundraiser or Special Event Volunteer

It's about that time when the cooler weather hits and we do some out door races, running, skiing or out door fun activity have you considered  holding a special event and awareness 
for the American Porphyria Foundation?  Let's get creative, involved and work together!

Let's have some FUN!
Thanks to the efforts of our fund-raising volunteers, revenue generated through special events fundraising helps the APF link members through the In Touch network, fund research, and educate physicians, patients and the general public about porphyria. There are many creative ways to raise money, and we can guide you in designing a fundraiser that will be easy for you to run. Some people enjoy hosting community events like a run or a raffle. Others prefer neighborhood events like a spaghetti dinner or bake sale.
Many of our members have written a letter to their family, friends, co-workers or religious community to let them know how the APF has helped them and asking recipients to give to the APF. Doing this will help educate others about a condition that has deeply affected your life, and help other porphyria patients at the same time.
Many families have had success asking people to donate in honor of a birthday, or in memory or honor of someone special to them.
Be sure to let people you write to know:
1) What you are asking them to do and why;
2) What porphyria has meant to you;
3) How the APF has affected your life; and
4) How to donate.
Before you begin planning a fundraiser, please contact us at the APF office (866-APF-3635 or 713-266-9617). Remember, we are here to help you meet your fundraising goals. We can help you brainstorm, provide suggestions and put you in touch with others who have organized similar events. Thank you for your help, and happy fundraising!

Rememberâ?¦..Research is the key to your cure!

The Bogus Connection between "MCS" and Porphyria Stephen Barrett, M.D.

Friday - September 6, 2013 @ 10:30:03

The Bogus Connection between
"MCS" and Porphyria

Stephen Barrett, M.D.

Porphyria is a well-defined group of disorders caused by abnormalities in the chemical steps that lead to heme production. Heme, a molecule needed by all of the body's organs, is found mostly in the blood, bone marrow, and liver. Heme is a component of hemoglobin, the molecule that carries oxygen in the blood [1].
The signs and symptoms of porphyria vary among the types. Some types (called cutaneous porphyrias) cause the skin to become overly sensitive to sunlight. Exposed skin may develop redness, blistering, infections, scarring, changes in pigmentation, and increased hair growth. Other types of porphyria (acute porphyrias) mostly affect the nervous system. Appearing quickly and lasting from days to weeks, acute signs and symptoms include abdominal pain, vomiting, constipation, and diarrhea. During an attack, a person may also experience muscle weakness, seizures, fever, loss of sensation, and mental changes such as anxiety and hallucinations. Two forms of porphyria have a combination of acute symptoms and symptoms that affect the skin [1]. Most forms of porphyria are inherited.
In contrast, "multiple chemical sensitivity" ("MCS") is a medically disputed term used to describe people with multiple troubling symptoms they attribute to environmental factors. Many such people are seeking special accommodations, applying for disability benefits, and filing lawsuits claiming that exposure to common foods and chemicals has made them ill. Their efforts are supported by a small network of physicians who use questionable diagnostic and treatment methods. Practitioners who promote MCS as a diagnosis claim that it is caused by extremely low levels of chemical substances found in the environment. However, no scientific tests have ever been able to detect an organic basis for the diagnosis, and no major medical organization recognizes MCS as a clinical disease. Instead of testing their claims with well-designed research, its advocates promote them through publications, talk shows, support groups, lawsuits, and political maneuvering [2].

Shifting Claims

In the 1990s, partly in response to the fact that courts were not recognizing MCS as a disease, many proponent doctors began inappropriately diagnosing disorders of porphyrin metabolism in large percentages of their patients [3]. Although the porphyrias are rare, these doctors claim that many MCS patients have porphyrin abnormalities and that the same environmental substances can trigger both conditions [4]. Their strategy was laid bare in a 1996 article in Our Toxic Times which said that diagnosing one of the porphyrias was advantageous because they have a recognized diagnostic code and doctors who dont know about MCS or dont believe in it do believe in porphyria. [5] Another issue of the newsletter contained a porphyria symptom check list of about 90 possible symptoms. [6] Porphyrias do not have that many symptoms.
Expert reviewers have concluded that the proposed relationships between MCS and porphyrin disorders should be considered speculative and unestablished and do not justify using any measures that are appropriate for treating porphyrias [7]. In 1995, the Washington State Department of Labor and Industries and the Washington State Medical Association issued an authoritative guide to diagnosing porphyrin disorders [8].

Flawed Laboratory Testing

Most of the purported association of porphyria with MCS is based on results obtained with the urinary coproporphyrin assay, a laboratory test performed by the Mayo Clinic. However, the test has never been validated. Although "MCS" patients reportedly showed modest increases in urinary coproporphyrin excretion, this is a common finding found in many people without symptoms and also in patients with diverse other conditions such as diabetes mellitus, heavy alcohol use, liver disease, and many kinds of anemia. In 1997, two porphyria experts at the University of Massachusetts Medical Center noted these facts and warned that the test was not reliable, had not been validated, and should not be used [9]. In 1999, two Mayo researchers concluded that 56 out of 64 of the enzyme tests performed by the Mayo laboratory should not have been ordered and that there was "substantial overordering" of other tests and "inadequate physician knowledge about the interpretation of test results in the evaluation of acute porphyria." [10] Their report did not reveal the fact that most of the inappropriate enzyme tests were ordered by William Morton, M.D. of Oregon Health Sciences University, who was the MCS-porphyria connection's leading advocate.

Court and Regulatory Actions

I know of three cases in which judges gave no credibility to a porphyrin-MCS connection.
In 1991, a trial court ruled that plaintiff's immune assays, including calla and porphyrin antibody testing, performed by Dr. Bertram Carnow, were inadmissible because plaintiff failed to prove that the testing was "acceptable to at least a substantial minority of the relevant scientific community." [11]
In 2001, an administrative law judge ruled against a claimant who sought compensation for alleged work-related porphyrin deficiency and relied on testimony of Dr. Morton. According to a case summary I found on the Internet:
The [Administrative Law Judge] rejected Dr. Mortons opinion because it was clear that Dr. Mortons opinion was not based upon the same level of intellectual rigor that characterizes the practice of experts in this field of medicine. Dr. Morton was outside of the medical mainstream and his analysis was non-scientific since his description of the disease and environmental causes was so broad as to be meaningless. He also had no scientific basis for rejecting known and accepted testing techniques which were objective, reproducible, and reliable in terms of locating levels of enzyme residue that would be created by this particular disease [12].
In 2004, the Oregon courts ruled against a woman in a similar case, which the appeals court summarized this way:
Throughout 1996 and 1997, after leaving her employment with Lane County, petitioner continued to see her physicians for complaints of chemical reactivity. In May 1997, Dr. Morton, a specialist in occupational medicine, diagnosed petitioner as having "active porphyrin metabolic dysfunction" (i.e., porphyria). He explained that people "with porphyria traits are abnormally susceptible to porphyrogenic substances," such as the fumes from certain types of chemicals and substances. He further explained that, "Once activated, porphyria symptoms do not always stop when the initiating exposure stops." In connection with a workers' compensation claim that petitioner filed with Lane County, petitioner was also examined by Dr. Burton, a specialist in medical toxicology and occupational medicine. In Burton's opinion, petitioner's history and symptoms were not consistent with a diagnosis of porphyria, and petitioner does not suffer from that condition. Burton also opined that the diagnosis of MCS given by one of petitioner's treating physicians was not a legitimate medical diagnosis. In Burton's view, physicians use a diagnosis of MCS to explain a variety of nonspecific symptoms otherwise not organically explainable [13]
In 2001, the Oregon Board charged Morton with inappropriately diagnosing "porphyria" with the result that patients received inappropriate treatment from him or other providers [14]. In 2002, rather than facing the charges, Morton agreed to retire his license [15]. Because Morton was by far the leading proponent of the MCS-porphyria connection, his "retirement" and judicial thrashings signaled the end to what Dr. Burton recently dubbed "the porphyria epidemic." [16]
Additional Information


  1. Porphyria. Genetics Home Reference Web site, Nov 2006.
  2. Barrett S. A Close Look at "Multiple Chemical Sensitivity". Allentown, Pa: Quackwatch Inc., 1998.
  3. Wilson C. Porphyrinopathies in the MCS community. Our Toxic Times 7(3):14, 1996.
  4. Morton W. Chronic porphyrias role in MCS. Our Toxic Times 6(8):2224, 1995.
  5. Wilson C. Hallmark feature of MCS and porphyria. Our Toxic Times 7(10):18, 1996.
  6. Porphyria symptom check list. Our Toxic Times 7(6):2021, 1996.
  7. Collaborative guidelines on the diagnosis of porphyria and related conditions. Olympia, Wa.: Washington State Department of Labor and Industries, Oct. 18, 1995.
  8. Daniell WE and others. Environmental chemical exposures and disturbances of heme synthesis. Environmental Health Perspectives 105(Supplement 1):3753, 1997.
  9. Hahn M, Bonkovsky HL. Multiple chemical sensitivity syndrome and porphyria. A note of caution and concern. Archives of Internal Medicine 157:281-285, 1997.
  10. Mattern SET, Teffari A. Acute porphyria: The cost of suspicion. American Journal of Medicine 107:621-623, 1999.
  11. Newman v. Stringfellow. Case No. 165994, California Superior Court, Riverside County, Jan 17, 1991.
  12. Dr. Morton (of OHSU) opinion on porphyria rejected. NWLAA Case Law Review, July-August 2001.
  13. Judicial review. Henderson v. Public Employees Retirement Board. Oregon Court of Appeals 99-0421;A1187341, filed Dec 8, 2004.
  14. Complaint and notice of proposed disciplinary action. In the matter of William Edwards Morton, MD Before the Board of Medical Examiners, State of Oregon, Dec 3, 2001.
  15. Stipulated order. In the matter of William Edwards Morton, MD before the Board of Medical Examiners, State of Oregon, Jan 17, 2002.
  16. Burton B. E-mail message to Dr. Stephen Barrett, Jan 21, 2010.
This article was revised on January 22, 2010.

Rememberâ?¦..Research is the key to your cure!

CME Course is Back by Popular Demand

Thursday - September 5, 2013 @ 10:30:00

CME Course is Back by Popular Demand

Continuing Medical Education (CME) 
Physicians are required to have Annual Continuing Medical Education courses.  Fortunately, they have the opportunity to take this outstanding CME course about Acute Porphyrias and receive FREE CME credit.  Please tell your doctor about this course which was offered last year and has been brought back by demand and is offered at the following link.  CME courses require registration but most physicians are already registered.

Herbert L. Bonkovsky, MD; Manisha Balwani, MD, MS; Karl E. Anderson, MD; Brendan Martin McGuire, MD, MS Faculty and Disclosures.  CME Released: 01/19/2010; Reviewed and Renewed: 07/08/2013; Valid for credit through 07/08/2014

This activity is intended for hematologists, gastroenterologists, primary care physicians, emergency medicine physicians, obstetricians/gynecologists, and other healthcare professionals who may encounter patients with the acute porphyrias.
The goal of this activity is to provide an informative discussion on some of the major issues associated with acute porphyrias, including recognition, evaluation, treatment, complications, and prevention.
Upon completion of this activity, participants will be able to:
  1. Recognize signs and symptoms of and conduct appropriate testing to promptly and accurately diagnose the acute porphyrias
  2. Evaluate current recommendations and emerging approaches for the management of the acute porphyrias
  3. Discuss complications associated with the acute porphyrias and their treatment

Rememberâ?¦..Research is the key to your cure!

Porphyria Awareness & Fundraising Events!

Wednesday - September 4, 2013 @ 20:42:36

  Past and Present Porphyria Awareness &  
Fundraising Events.  
*Events are listed below with the most recent Event first.*

~ Official APF Porphyria Awareness T-Shirts are Available Now!    Read more.

~ Running over obstacles to raise Awareness for Porphyria.  Read more.

~ Amy Chapman's Porphyria Awareness and Fundraising Campaign.  Read more.

~ Cook Brothers and Family Promote Awareness Week.  Read more.

~ Student Alessia Callahan Educates Classmates during National Porphyria Awareness Week.  Read more.

~ Monica's Porphyria Awareness Week Event.  Read more.

~ FDA Letters From People with EPP.  Read more.

Coming up soon will be a special event that Polly Barton Harvard will share in and she hopes that you will to more details to come.

Remember..Research is the key to your cure!

Finding a Doctor

Wednesday - September 4, 2013 @ 20:39:21

Finding a Doctor

The American Porphyria Foundation promotes comprehensive care necessary for treating individuals with Porphyria.  This section of our website offers suggestions for finding a local doctor who can manage your Porphyria, options for having your doctor consult a Porphyria specialist, and information on arranging a visit to a Porphyria clinic.
Because Porphyria is so rare, few physicians have experience treating patients with the disease.  Most patients are in fact treated But the APF can help by putting your doctor's office in touch with a Porphyria specialist who can offer guidance on your care.
For those who need a diagnosis, you may be able to obtain a consultation at Porphyria clinic. Call the APF to reach a porphyria expert at a porphyria center.  The APF office will also guide you to doctors who are not experts but are knowledgeable about porphyria. You may be asked to send your blood, urine, and stool samples for evaluation in advance of a clinic appointment.  Especially if you plan to travel for a consultation, it is a good idea to call ahead and explain that you would like to be evaluated for Porphyria so that you can be sure you have done any necessary testing in advance.  If local video conferencing facilities are available, telemedicine consultation with a Porphyria expert is also available.
Regardless of your situation, it is best to establish a good relationship with a doctor in your area.  Developing a relationship with a primary care physician takes time and can be frustrating, particularly when you have difficulty finding a doctor who will manage your care.  In this section of the website, you will also find Tips for the Doctor's Office that may help.
If you're having trouble finding a local doctor, the following organizations' doctor finder or physician referral services could be helpful.  The APF does not recommend or endorse the doctors listed through these sites.
If you would like to read about supporting programs to ensure the quality of specialists in the field of porphyria, please see our Protect Our Future campaign information.
 "Remember.Research is the key to your cure!"

2013 International Porphyria Conference Video and Audio are available

Monday - September 2, 2013 @ 20:24:59

2013 International Porphyria Conference Video and Audio are available

The International Porphyria Patient Day, organized by the Swiss Society for Porphyria and the German EPP Patient Group, was held on Saturday, May 18th, 2013. 

Video and Audio of the International Porphyria Conference are available by joining
On the video, representatives from patient groups introduce themselves; tell about the organizations in their respective countries and share patient testimonials.
Porphyria Argentina - Estela Y. Ferrari de Frassia
Porphyria Australia - Sean Hegarty
Porphyria Brazil - Bénie Maria Scandelari Bussmann
Alberta Porphyria Society (Canada) - Wendy Suave
Porphyria France - Sylvie Le Moal
Porphyria Spain - Joaquin Montoto
Porphyria Sweden - Kerstin Bjernevik
Porphyria United Kingdom - John Chamberlayne
American Porphyria Foundation - Desiree Lyon Howe (no slide show)
EPP Germany - Verena Schmeder
Porphyria Switzerland - Rocco Falchetto

The video also contains the medical presentations given at the meeting:
Acute porphyrias : Diagnosis, complications and treatment options - Pr Jean-CharlesDeybach, MD, PhD
Erythropoietic Porphyria : Treatment options and long-term complications - Staffan Wahlin MD PhD
Pain in Porphyria - hepatic and cutaneous - Dr. Matthias Firnau
 "Remember.Research is the key to your cure!"

Orphan Europe- Recordati Group-Panhematin- Think beyond the obvious THINK PORPHYRIA

Tuesday - August 27, 2013 @ 20:21:18

Do you think you could have Acute Porphyria? Do you need to see a Physician for testing?  If you have questions please call the American Porphyria Foundation for finding assistance with a Doctor @ 
866-APF-3635 or visit for additional materials and help.

"Remember.Research is the key to your cure!"

NEW shipment of APF T-shirts are in get yours today!

Monday - August 26, 2013 @ 12:16:02

The new shipment of APF T-shirts are here!

Our hope for the T-shirts is that you all will buy and wear them to help promote and raise questions about Porphyria and to raise funds for the Dr. Packets, pain Management docs, among many other publications we make available at no cost.
Amy Chapman is heading up the T-shirt project. There are also some copies of Porphyria Live for sale. For information on how to order the T-Shirts and/or the Porphyria Live Video see below.
You can order a T-shirt and/or Porphyria Live DVD by sending an email order
I must have name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one. And include the quanity of the Porphyria Live Video.
To accept payment: One of two options I can accept Paypal VISA/MC only I must have full name on the card, account#, exp. date, 3 digit code on back of card CVV- 
I will accept money orders and personal checks.  You must have name/address/phone # on them.  Your information will be kept confidential and never on file, and will be destroyed promptly after each transaction.
They can be mailed to me:
Amy Chapman
10475 Gandy BLVD N. Unit 3417
St. Petersburg FL 33702.  

*The APF will not take orders or calls about T-shirts*
Once I receive the order I will ship out your product.

All products will be shipped out Priority mail with tracking.  Each person also will receive a receipt with T-shirts.
T-shirts come in the following sizes S, M, L XL, 2xl, 3xl they are 100% cotton, heavy not thin, and very durable.  No other sizes.  
The price per T-shirts is $19.00/shirt. This covers the shirt, shipping and tracking, and priority mail.  International orders: I will have to consult first with the post office for shipping rates.
The price of the Porphyria Live DVD is $10.00 each. Shipping is included in the price.

100% of all funds received will go back to the APF

"Remember.Research is the key to your cure!"

8-2-13 EPP meeting and Afamelanotide/SCENESSE

Friday - August 23, 2013 @ 17:09:55

August 2, 2013 was a memorable day for the APF members, who met at the FDA to explain Erythropoietic Protoporphyria (EPP) and ask that the FDA approve Afamelanotide/SCENESSE for EPP. Most of the attendees had participated in either the Phase II or Phase III clinical trials and were eager to elaborate on their positive experience on the drug.  We sincerely thank Florence Rollwagen, Diana Ijames, Mike Kenworthy, Steve Ferry, Pierre Mouledoux, Mike Ferry, and Andrew Turell, who spoke eloquently about EPP and its effect on their lives.  Each person presented unique aspects of dealing with EPP, as well as their experience with the treatment.  It was poignant to hear how a daily life of pain, isolation and anxiety was changed when they receivrd the implant.  Johnathan Turell, and Kristen Wheeden spoke about being parents of a loved one with EPP and shared the family dynamics that occur with the disease.

We also thank Desiree Lyon Howe, who arranged the meeting with the FDA and gave an overview of the APF efforts for the Phase II and Phase III clinical trials, as well as discussed the Porphyria Research Consortium of porphyria experts and their research on Afamelanotide. Our appreciation goes to the co-chairs of the Porphyria Research ConsoritumDrs Robert Desnick and Karl Anderson, who explained the disease and spoke on their research on Afamelanotide and their views on the beneficial effect it had on the research volunteers.  

Each of the presentations to the FDA representatives was outstanding. We hope they will assist the FDA in understanding the importance of approving a treatment for EPP, specifically approval of Afamelanotide as soon as possible.

"Remember..Research is the key to your cure!"

Diet Information for All Porphyrias

Wednesday - August 21, 2013 @ 13:24:08

Diet Information for All Porphyrias

Nutritional Advice for Persons with Porphyria

Herbert L. Bonkovsky, MD
Jessy Philip, RD, PhD
Carolinas Health Care System, Charlotte, NC
Department of Medicine, Univ of CT Health Center and Univ of NC School of Medicine

Overview:  Good nutrition is important for all of us, including those with porphyria.  For the most part, persons with porphyria should follow the sensible and usual dietary advice of the Centers for Disease Control, the US Department of Agriculture, and other responsible and reputable governmental agencies.
Because over-nutrition and obesity are such a great problem in the USA and other western countries, it is important that patients with porphyria do their best to avoid becoming obese or gaining weight beyond their ideal body weights.  The acute porphyrias [acute intermittent porphyria, hereditary coproporphyria, variegate porphyria, and ALAD deficiency porphyria] may be made worse by prolonged fasting or severe ['crash'] dieting, because, in these forms of porphyria, glucose and other carbohydrates help to repress the activity of hepatic ALA synthase 1, the first enzyme of the heme synthetic pathway.  In these forms of porphyria, uncontrolled up-regulation of ALA synthase 1 in the liver is a necessary component of the metabolic abnormalities that may give rise to acute attacks.
General Advice:  There is no special or particular diet required or recommended for persons with porphyria.  Rather, the principles of good and sensible nutrition apply.  These principles call for a varied and balanced diet, particularly with avoidance of over-nutrition.  Consumption of too many calories, in excess of daily needs for calorie and energy consumption, has emerged as one of the greatest public and personal health problems of Americans.  The growing problem of obesity is present in much of the world, not just in North America.
          Figure 1 shows current general dietary recommendations for Americans, as developed by the Department of Health and Human Services and the Centers for Disease Control.  Such advice should be followed by persons with porphyria, as well as those without.  The keys are adherence to a varied and balanced diet with balanced, moderate consumption of carbohydrates, protein, and fats.  To reduce the risks of cardiovascular diseases, such as atherosclerosis or heart attacks, the fats should include little or no trans-fats and preferably include a substantial proportion as unsaturated fatty acids [such as olive oil, safflower oil], rather than saturated fatty acids [such as animal fat].  The protein may be in the form of animal or vegetable protein.  The carbohydrates should preferably not include large amounts of refined sugars or high fructose corn syrup, although oral or intravenous carbohydrate in the form of dextrose may be prescribed for therapy of acute attacks of porphyria.  However, day in and day out, even persons with one of the acute porphyrias should not be consuming large amounts of dextrose (sugar) or fructose. 
Nutritional Advice for Persons with Acute Porphyria.  The acute or inducible porphyrias include acute intermittent porphyria (AIP), hereditary coproporphyria (HCP), variegate porphyria (VP), and porphyria due to severe deficiency of ALA dehydratase (ALADP).  Most persons that have one of these forms of porphyria, all of which are due to inherited deficiencies in one of the enzymes of heme biosynthesis, have no symptoms or signs of porphyria most of the time.  They may, however, occasionally develop acute attacks, usually characterized by severe bouts of abdominal pain with increases in blood pressure and pulse rate and with severe constipation.  Sometimes, the pain may be in the chest, back or extremities instead of, or in addition to, the abdomen [belly].  Such attacks are characterized by a marked up-regulation of an enzyme in the liver called delta-aminolevulinic acid synthase 1 (ALAS1).  This up-regulation leads to a marked over production and urinary over-excretion of delta-aminolevulinic acid (ALA) and porphobilinogen (PBG), which are the biochemical hallmarks of acute porphyric attacks. 
The treatment of such acute attacks is focused on decreasing the up-regulation of hepatic ALAS1.  This is done by the administration of sugar [dextrose] and by the administration of heme, which must be given intravenously.  During acute attacks, patients often have nausea and vomiting, as well as disturbances of normal gastrointestinal function, so that it is necessary for the dextrose to be administered intravenously, as well.  If the attacks are less severe, however, patients may be able to take in dextrose orally, such as by adding sugar to orange juice, by sucking on hard candies, etc.  During such acute attacks, the usual therapeutic recommendations by experienced physicians are for the daily intake of dextrose or other metabolizable carbohydrates to be approximately 300 grams per day. 
          It is also important for persons with one of the acute porphyrias to avoid drugs or other factors that are known to be able to trigger acute attacks.  Chief among these are estrogen and especially progesterone.  Thus, some menstruating women unfortunately experience monthly symptoms during the middle of their menstrual cycles, around the time of ovulation, when their endogenous production of progesterone is at a peak.  Such women may benefit from drugs such as gonadotropin-releasing hormone antagonists [leuprolide] or low doses of oral contraceptives, which interrupt their normal monthly hormonal cycles.  Some benefit from receiving prophylactic infusions of Panhematin on a monthly basis, typically administered shortly before the time of the month when they ovulate [mid-menstrual cycle]. 
          A number of drugs and chemicals are capable of up-regulating hepatic ALAS1 and are thus best avoided by persons with acute porphyria.  Such drugs include barbiturates, such as phenobarbital, hydantoins such as phenytoin and carbamazepine, sulfonamides such as sulfamethoxazole or sulfisoxazole [and many others].  Another factor that is capable of triggering acute porphyric attacks is excess intake of alcoholic beverages.  Thus, persons with acute porphyria should avoid any binge drinking.  Good general advice is that men should drink alcohol either not at all or not more than two drinksl per day and women should drink not all or not more than one drink of alcohol per day. 
          Any acute stress such as an acute illness or severe emotional or psychological stress or exhaustion may also trigger acute porphyric attacks.  Therefore, patients with acute porphyria should receive vaccinations to protect them from preventable acute infections, including annual flu shots, Pneumovax [a vaccination that protects against development of pneumonias], vaccinations to protect against diphtheria pertussis and tetanus, with booster shots for tetanus at least every ten years, vaccinations to protect against hepatitis A or hepatitis B infection, and for those who have had chicken pox, the vaccination to protect against development of shingles (Zostrix).
          There is no convincing clinical or scientific evidence that any particular foods (with the exception of alcoholic beverages, as described above) are capable of triggering or worsening acute porphyric attacks.  There are, however, some foods that have been shown to contain chemical substances that, in large amounts, can up-regulate hepatic ALA synthase 1.  Such foods include charcoal-broiled meats, cabbage, and Brussels sprouts.  The amounts of such foods that would need to be eaten in order to produce induction of hepatic ALA synthase 1 have not been carefully studied, but are probably far above the amounts that would be eaten as part of reasonable, well balanced diets.  None of these foods needs to be avoided completely by persons with acute porphyria, unless they have true allergies to them, which are very uncommon.  Moderation in all things is the best course of action.  The Appendix lists suggested meal plans for persons with acute porphyria who are of normal weight and with normal daily needs for energy [~30-35 Kcal/kg BW/d].
Dieting in Acute Porphyria.  It is important that persons with acute porphyria avoid crash diets with extreme decreases in daily carbohydrate and caloric intakes.  However, it is also important that they avoid obesity.  If they already are obese, they should gradually lose weight.  This should be done with a formal diet plan and under the supervision of an experienced physician and nutritionist.
Sulfur Containing Amino Acids and Essential Amino Acids.  Our normal diets contain proteins.  In fact, regular and adequate intake of protein is essential to normal growth and health.  Proteins are found in both vegetable and animal sources of foods.  The building blocks of proteins are called amino acids.  Some of these amino acids, such as methionine and cysteine, contain sulfur.  Such amino acids are not the same thing as "sulfa drugs".  They are not contraindicated for patients with acute porphyria.  In fact, methionine is one of the nine essential amino acids:  if adequate amounts of these nine amino acids [histidine, isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine] are not consumed regularly, deficiencies will develop that can lead to malnutrition and disease.  The reason is that humans are unable to make these amino acids and must take them in regularly, in order to achieve and maintain adequate levels to permit their bodies to make the hundreds of thousands of proteins that are essential for good health.
Porphyria Cutanea Tarda [PCT].  The major risk factors for the development of porphyria cutanea tarda are excess alcohol intake, cigarette smoking, increased iron, certain chronic viral infections, especially hepatitis C virus and human immunodeficiency virus, and estrogens.  About 20 to 25% of persons with porphyria cutanea tarda (PCT) also have a genetic predisposition in the form of a inherited partial deficiency of an enzyme called uroporphyrinogen decarboxylase.  However, such a deficiency in itself is not sufficient to produce symptomatic PCT; other factors are also needed.
          The main dietary advice for persons with porphyria cutanea tarda is to avoid all alcohol in any form.  In addition, adherence to a low iron diet with avoidance of any medicinal iron and with ingestion of limited amounts of liver or red meat, is recommended, at least until remission of active PCT has been achieved.  Remission is achieved by the removal of iron, usually by therapeutic phlebotomy, which is the removal of one unit of blood every week or two.  This is continued until an iron reduced state has been achieved.  Patients with active PCT typically require the removal of eight to twelve pints of blood, although this number is variable.  The progress of iron removal is best followed with serial measurements of serum ferritin.  The ideal serum ferritin is 50 to 100 ng per ml.  Typically, removal of one pint of blood will lead to a decrease in serum ferritin of about 30 ng per ml.  An alternative for the treatment of PCT, especially without acquired or inherited iron overload [hemochromatosis] is the use of low dose-antimalarial drugs, such as chloroquine or hydroxy-chloroquine.
Erythropoietic Protoporphyria [EPP].  In EPP there is excess production of protoporphyrin by developing red blood cells in the bone marrow.  This is due usually to an inherited deficiency in an enzyme called ferrochelatase or heme synthase, the final enzyme in the heme synthetic pathway.  A less common form of EPP is caused by an increase in activity of the erythroid form of ALA synthase [ALAS2], the first enzyme of the heme synthetic pathway. 
          Many persons with EPP have a mild degree of anemia with measures of iron that suggest iron deficiency.  Some such persons appear to benefit from iron administration, although often, despite taking medicinal iron, they continue to have low levels of serum iron, increases in iron binding capacity, and low levels of serum ferritin, suggesting that they are not absorbing the iron in a normal way.  For unknown reasons, a few persons with EPP and evidence of iron deficiency have seemed to worsen with iron administration.  Therefore, use of medicinal iron supplements in EPP should be undertaken carefully and with careful monitoring by an experienced physician.
          There also have been a few reports that intake of glucose has led to an improvement in EPP.  In addition, the use of intravenous heme [which contains iron] has been found to help improve liver damage in persons with EPP.
          For the most part, there is no particular special diet recommended for patients with EPP.  A varied well balanced diet with avoidance of excess calories and with assurance of adequate intakes of iron and other minerals and vitamins is recommended.
Rare Cutaneous forms of Porphyria.  Congenital Erythropoietic Porphyria.  CEP is a rare genetic disorder characterized by deficient activity of an enzyme called uroporphyrinogen 3 synthase (also sometimes called uroporphyrinogen co-synthase).  It is characterized by severe over-production of uroporphyrin 1, which is manifest at birth and in the neonatal period.  There is no particular diet that is indicated or recommended for persons with CEP.  The same thing may be said of the rare form of cutaneous porphyria called hepato erythropoietic porphyria, which presents in the new born period, as does CEP, but which is due to severe deficiency of uroporphyrinogen decarboxylase (homozygous or compound heterozygous deficiency). 
Advice about Vitamins and Minerals:  For most Americans who are consuming mixed, well-balanced diets, there is no need for routine use of vitamin or mineral supplements.  Persons who consume few dairy products [milk, yogurt, cheese, etc] and older persons, especially women, and those with little exposure to sunlight are prone to develop deficiencies of vitamin D and to have inadequate intake of calcium.  Thus, they should have their serum levels of 25-hydroxy vitamin D checked and should seek advice of a well-trained physician or nutritionist regarding supplements of vitamin D and calcium.  There is potential harm from the excessive intake of vitamin D or calcium, or of excessive intakes of other fat-soluble vitamins [vitamins A and E].  Thus, moderation in intake is best.  There is little harm, but also little likelihood of benefit, in the intake of water-soluble vitamins [vitamins B and C].  Iron may trigger or worsen porphyria cutanea tarda, and it may also increase levels of hepatic ALA synthase 1.  Thus, it should not be taken in medicinal form unless there is evidence of iron deficiency.  There is little reason for anyone with porphyria [or most without porphyria] to take in supplemental copper, zinc, selenium, chromium, silver, gold, or other  metals.
Advice about Herbal Remedies and Dietary Supplements.  Herbal remedies and dietary supplements (HDS) have become popular in the USA and in many other parts of the world.  In fact, there is widespread irrational enthusiasm for taking such supplements.  We recommend against their use because the composition and purity of them are uncertain.  They are unregulated by the US Food and Drug Administration, and they have not been shown to be safe and effective.  Many of them probably contain chemicals that are capable of up-regulating hepatic ALAS1 and thus of triggering or exacerbating acute porphyria.  In addition, they often are adulterated with potentially toxic substances, such as heavy metals.
"Remember..Research is the key to your cure!"

CME Course

Monday - August 19, 2013 @ 16:24:31

Continuing Medical Education (CME) 
Physicians are required to have Annual Continuing Medical Education courses.  Fortunately, they have the opportunity to take this outstanding CME course about Acute Porphyrias and receive CME credit.  Please tell your doctor about this course which was offered last year and has been brought back by demand and is offered at the following link.  CME courses require registration but most physicians are already registered.

Herbert L. Bonkovsky, MD; Manisha Balwani, MD, MS; Karl E. Anderson, MD; Brendan Martin McGuire, MD, MS Faculty and Disclosures.  CME Released: 01/19/2010; Reviewed and Renewed: 07/08/2013; Valid for credit through 07/08/2014

 This activity is intended for hematologists, gastroenterologists, primary care physicians, emergency medicine physicians, obstetricians/gynecologists, and other healthcare professionals who may encounter patients with the acute porphyrias.
The goal of this activity is to provide an informative discussion on some of the major issues associated with acute porphyrias, including recognition, evaluation, treatment, complications, and prevention.

Upon completion of this activity, participants will be able to:
  1. Recognize signs and symptoms of and conduct appropriate testing to promptly and accurately diagnose the acute porphyria
  2.  Evaluate current recommendations and emerging approaches for the management of the acute porphyrias
  3. Discuss complications associated with the acute porphyrias and their treatment

"Remember..Research is the key to your cure!"

Protecting Your Job While Coping With a Chronic Illness

Monday - August 19, 2013 @ 16:09:42

Protecting Your Job While Coping With a Chronic Illness

Dawn Villella for The New York Times
Natasha Frechette, diagnosed with multiple sclerosis two years ago, has continued her job at Navigo Research in Brooklyn Park, Minn., with the help of an understanding boss and supportive colleagues.
Published: June 19, 2009

IT started with an odd sensation in her right hand and a feeling of exhaustion so profound she could hardly get through an hour of work, let alone a full day.
After numerous tests and countless doctors visits, Natasha Frechette, then 27, learned she had multiple sclerosis, a disease that attacks the central nervous system and can cause numbness, blindness and eventualparalysis.
In addition to grappling with the diagnosis, Ms. Frechette was concerned about keeping her job as a data manager for a small research organization in Brooklyn Park, Minn. I didnt want to have to depend on someone to take care of me, she said. "But I know that I could wake up tomorrow and not be able to walk."
Workers with chronic illnesses face chronic uncertainty, forced to worry not only about their health but about their jobs as well. The protections afforded chronically ill workers in the United States are thin and somewhat vague. To protect their health and their jobs, workers must navigate employers policies, which may include short- and long-term disability plans, as well as a patchwork of federal laws and regulations.
A recent study by the Center for Economics and Policy Research, a Washington research organization, found that among 22 rich nations, the United States was the only one that did not guarantee workers paid time off for illness.
Most other countries provide their workers not only with paid sick days, but also time off for cancer treatments, the study found. German citizens, for example, are allowed five sick days and 44 days for cancer treatment, if needed, in addition to vacation days.
Most employers in the United States allow employees to take days off for minor ailments, like the flu or outpatient operations, without docking their pay. And 41 percent offer employees days off nine, on average for illness or other reasons, in addition to vacation days, according to a 2007 survey by Mercer, a benefits consulting business based in New York.
But when an employee has a serious or chronic illness, like diabetesmajor depression orlupus, the rules about time off become murky.
Two laws offer workers some relief. The Family and Medical Leave Act allows employees to take up to 12 weeks off each year for medical or family emergencies but without pay. And the Americans With Disabilities Act requires employers to make reasonable adjustments for disabled workers, often in the form of additional time off.
Ms. Frechette explained her condition to her supervisor and said she would need time off for physical and occupational therapy. Her boss readily agreed, and Ms. Frechette, who plans to marry this fall, continues to work full time.
Im careful, she said. "I dont want my disease to be seen as a cop-out.
If you are dealing with an chronic illness, here are some strategies to help you maintain your job.
INFORM YOUR EMPLOYER If you have a condition that could interfere with your performance, tell your boss. People are often afraid of being discriminated against, saidRosalind Joffe, a career coach who counsels people with chronic illnesses. I had one client who didnt disclose his illness to anyone. His odd behavior led his boss to conclude he was a drug abuser.
Be honest. Explain what your condition is and how it might affect your work. Dont be ashamed, Ms. Frechette said.
A supervisor who understands what is wrong is less likely to make false assumptions about what you can and cannot do. Be clear about your value and what you can deliver, Ms. Joffe said. If youre a valued employee, your boss will work with you.
If you feel you are being unfairly treated, speak with your supervisor. If that doesnt work, go to the human resources department.
ASK FOR ADJUSTMENTS If your illness meets the definition of a disability, your employer is required to make reasonable accommodations to your job or work environment, according to the Americans With Disabilities Act.
What is a disability? Its a physical or mental impairment that substantially limits one or more major life activities, said Chris Kuczynski, director of the division that deals with the disability act at the federal Equal Employment Opportunity Commission.
Although your illness may be episodic or controlled by medications, it is still a disability, according to a recent amendment to the law.
Your employer does not have to provide an accommodation if it would impose significant difficulty or expense. Asking for a car and driver to take you to and from work would probably not be reasonable, Mr. Kuczynski said. But taking time off for chemotherapytreatments certainly would.
According to the Society for Human Resource Managers, the top five accommodations for the disability act provided by employers in 2005 (the last year for which data are available) were parking or transportation modifications, making existing facilities accessible, offering new equipment to workers, restructuring jobs and modifying the work environment.
If you are not sure what type of accommodations you are entitled to or how to ask for them, contact the Job Accommodation Network (800-526-7234), a service provided by the federal Department of Labor. In general, the network recommends that you put your request to your employer in writing. If you work in a small, informal setting, that may not be necessary.
KNOW THE TIME-OFF POLICIES You can learn about the on-the-books rules by going to your companys intranet or speaking with its human resources department.
If you need to take a few weeks or months off for an operation, for example, or chemotherapy, research your companys short- and long-term disability plans. Disability policies typically allow you to take a specific time off at reduced pay. According to Mercer, the consulting firm, 78 percent of employers offer short-term plans and 80 percent offer long-term disability plans.
You can also tap into your 12 weeks of family and medical leave at any time. You may take the time intermittently or all at once. You will not be paid, but your job will be secure.
EXPLORE ALTERNATIVES If the hours are too long or the work is too taxing to handle while you are ill, find out whether you could work part time or could even take a different job in your company.
If neither is feasible, explore new career possibilities. One of Ms. Joffes clients was a high-powered lawyer who had a serious heart condition. To reduce stress, he decided to give up litigation and become a teacher.
If you are worried about your finances or health insurance, be sure to check with the advocacy organization focused on your disease. The American Cancer Society, for instance, has a call center (800-227-2345) that helps people who dont have health insurance or are on the verge of losing it.
If your illness finally prohibits you from working altogether, you may apply for Social Security disability insurance. The process is lengthy, and you must be able to prove that you cannot work at any job. The amount you are paid is based on your lifetime earnings you can find the number on the annual statement you receive from the Social Security Administration.
Generally, payments are modest: the average in 2008 was $1,063 a month. But once you have received disability payments for two years, you automatically qualify for Medicarecoverage..
"Remember.Research is the key to your cure!"

Attention: Important Announcement for AIP Study

Friday - August 16, 2013 @ 12:40:08

Alnylam Pharmaceutical will begin research on their new treatmen, ALN-AS1,t for AIP in early 2014. The APF will be working with Alnylam locating patient volunteers etc. 
ALN-AS1 is a subcutaneous RNAi therapeutic targeting aminolevulinate synthase-1 (ALAS-1) for the treatment of acute intermittent porphyria (AIP), an ultra-rare genetic disease. ALN-AS1 has the potential to be a therapy for the treatment of acute porphyria attacks, as well as a prophylactic approach for the prevention of recurrent attacks. Our first meeting on the subject was very exciting. Plus , the scientists presented a n overrview of the reseach at the International Porphyria Conference I will be meeting again with them in Sept and will tell you all the details. Research volunteers will be needed . If you are interested, contact me as we are beginning a list now please call and contact Desiree Lyons 866-apf-3635.

"Remember.Research is the key to your cure!"

Happy & Healthy

Wednesday - August 14, 2013 @ 12:49:21

Have a Happy & Enjoyable weekend to all.

Be Well, Stay Well

"Remember.Research is the key to your cure!"


Wednesday - August 14, 2013 @ 12:46:32

Did you know: Symptoms of PCT

The most common symptoms of PCT are fragility and blistering of light-exposed areas of the skinespecially the backs of the hands, the lower arms and the face. Patients often report that their skin is unusually fragile, so small bumps or knocks can scrape away the upper layer of the skin or cause a blister. The blisters contain fluid, rupture easily, crust over and then heal slowly. Skin infections, scarring and changes in coloration may result. Small white spots called "milia" are commonly found on the hands and fingers.

Another feature which is often seen is excessive growth of facial hair. The reason for this is not at present understood, but once the disease is under control, the hair can usually be easily and effectively removed by conventional methods. Some patients develop severe scarring and thickening of the skin, which is referred to as "pseudoscleroderma".

PCT is accompanied by some degree of liver damage. This is often mild or moderate. But over time there is a risk of developing cirrhosis and even liver cancer. Liver damage in PCT may be due in part to the excess porphyrins, which accumulate in very large amounts particularly in the liver. But other factors, such as alcohol, Hepatitis C and excess iron, can be important causes of liver damage.

Neurological symptoms, which are common in acute porphyrias, such as pain in the abdomen and extremities, are not features of PCT.

"Remember.Research is the key to your cure!"

Please Support the American Porphyria Foundation- We need your help.

Wednesday - August 14, 2013 @ 12:44:08

Support the American Porphyria Foundation

Please support  the American Porphyria Foundation today. When you support the APF, you are making a contribution to an organization that provides solid medical information, hope and essential support to those affected by porphyria. You can be proud to be an integral part of the help we provide patients on the road accurate diagnosis, proper care, and hopefully someday a cure.

We welcome donations by phone, mail, fax, or online. Please call us with toll free at 1-866-APF-3635 Monday-Friday from 9:00 a.m. to 4:00 p.m. CST. We accept VISA or Mastercard.
You may choose to honor a friend or loved one with your donation, or to remember someone with a memorial gift. 
 You can give online with a major credit card via PayPal:
Or you can click here to fill out and print a donation form, which you may fax or mail to our office:

American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056

Matching Gifts
Many companies offer matching gift programs to encourage their employees to make charitable contributions. Most of these programs match your contribution dollar for dollar, and some will even double or triple the amount of your gift.

To find out if your company will match gifts to the APF, please contact your employer to request their matching gift form and send it to us with your donation.

Financial Information

The American Porphyria Foundation was incorporated in 1983 as a tax-exempt 501(c)(3) organization. All contributions, grants and bequests are tax deductible. Our most recent 990 tax forms are available from the office.

Our work is supported primarily through donor contributions. We do not receive or use government funds.

"Remember.Research is the key to your cure!"

Mobile Web App for Safe/Unsafe Drug List

Wednesday - August 14, 2013 @ 12:43:21

Mobile Web App for Safe/Unsafe Drug List

Screenshot_mobile web app safe unsafe list 
We sincerely appreciate the hard work of APF member, Mr. Nicholas Frias , who designed a fantastic Mobile Web App for the Safe/Unsafe Drug List for the Acute Porphyrias.  He combined the APF list and the European and South African lists to create an easy to search list.

This Mobile Web App is very simple to use.   All you need to do is enter into your mobile device web browser to access it.  Follow easy instructions to add the list to your home screen.

  The desktop version works well, too.  Mr. Frias will be updating the list with the assistance of porphyria expert, Dr. Peter Tishler.  There is a comment section to track glitches in the system, so please feel free to add your comments, as Mr. Frias will continue to update the site.
This is a very special gift from Mr. Frias to people who have one of the acute porphyrias.  Please join the APF in sending him our sincerest thanks.

"Remember.Research is the key to your cure!"

For Healthcare Professionals

Monday - August 12, 2013 @ 19:15:03

For Healthcare Professionals

This section of the website includes more detailed information about the three most common types of Porphyria: AIP (and the clinically similar HCP, VP & ADP), EPP and PCT. For more general information, please see the About Porphyria section of the site. A more in depth discussion of diagnostic issues in the porphyrias can be found in the Testing and Treatment section of our website.
You will also find one free, online Continuing Medical Education course on the acute porphyrias, and a Powerpoint presentation on the porphyrias. You may also call our officeto order a copy of our free physician education packet.
Clinicians and researchers specializing in Porphyria are available to consult on suspected or confirmed cases of Porphyria, and to discuss the individual course of treatment. Some specialists can assist with diagnostic testing, and some are available for clinical consultation with patients. There is one telemedicine facility for Porphyria consultation in the country, at the University of Texas-Medical branch, in Galveston.
Please call the APF office at 713-266-9617 for information on contacting the specialist who can best answer your concerns.
The APF encourages you to let Porphyria patients know about our organization and our programs.  We publish educational brochures, written by Porphyria experts for a lay audience, and a quarterly newsletter in addition to this website. We also offer members a national support network, which for some people provides the first-in-a-lifetime opportunity to speak with someone who shares their diagnosis.
 "Remember. Research is the key to your cure!"

APF Newsletter's Past and Present

Friday - August 9, 2013 @ 19:14:21

Please be sure to take so time to read about the American Porphyria Foundation's Newsletters!  You can read about Dr. Info expert advice, suggestions, member stories tips on all the types of Porphyria.  Click on this link:

     If you would love to receive the newsletter in your mailbox please check out how you can become a member today.  Contact Yvette @ the American Porphyria Foundation @ 866-APF-3635 or email her today @

 "Remember. Research is the key to your cure!"

Read about our new APF FB Admin Pierre Mouledoux

Wednesday - August 7, 2013 @ 22:55:45

We would love to welcome out new FB Admin to the EPP,CEP group Pierre Mouledoux.
I asked Pierre a few questions so that we could all get to know about him & his family.  His background is very interesting and also how he has been able to support the
American Porphyria Foundation.  Thank you for opening up Pierre and I hope everyone enjoys reading this.
Pierre Mouledoux is a licensed real estate agent and the project manager for Sperry Van Ness/Gilmore Auction & Realty Co. in New Orleans. Pierre recently received his Notary commission after successfully passing the Notary examination. He currently serves as State Publicity Chairman for Louisiana Ducks Unlimited State Committee, and is a member of both the Jefferson Parish Ducks Unlimited and New Orleans Ducks Unlimited Committees. Pierre and his darling wife Alyse are expecting their first child due in January 2014. He is also an 2003 Eagle Scout of Troop 230 in Metairie, LA.
Having EPP severely limited his passion for the outdoors. Living in south Louisiana and being covered up as the current cure suggests made being outdoors that much more unbearable from the heat, humidity, and obviously the light.
After a reaction, a cold dark room with damp towels, ice packs, and hypo-allergenic baby lotion was what was in store for recovery.
Pierre was diagnosed with EPP at the age of 7 by an intern at Charity Hospital in New Orleans in 1992 after a long battery of tests in order to determine his light sensitivity. He became active in the EPP community after joining the American Porphyria Foundation and its Facebook groups. He participated in the phase III trials of Clinuvels Scenesse with the real drug and had promising results. The drug allowed him to do the things he loves such as hunting, fishing, and outdoor cooking.
He recently attended the FDA meeting in Washington DC to push for the approval of Clinuvels Scenesse and explain the success he had with the drug.
Pierre has been made an administrator of the APF Facebook Group EPP/CEP.

                           "Remember. Research is the key to your cure!"

Please read Urgent 4.5 million grant for Porphyria How you can get involved.

Tuesday - August 6, 2013 @ 11:16:01

The Porphyria Research Consortium has a an excellent chance at winning a $4.5 million research grant but YOU are needed. Unless we can locate enough research patients there can be no research trials. These projects are different than others. All that is required of YOU is to donate some of YOUR blood, swab YOUR cheeks for DNA and answer a questionnaire. There are seven studies in which you can choose to participate. Please contact Hetanshi Naik at or the APF. 
To be eligible for the Longitudinal Study of the Porphyrias:
Must have a confirmed diagnosis of one of the porphyrias
It is preferable if patients are able to come to a participating center to be clinically evaluated (through insurance if possible)
If patients cannot come to a center they can be seen by a local physician and have their records sent to a participating center along with the necessary samples (DNA, porphyria labs, etc)
To participate in the following studies the patient MUST already be in the Longitudinal Study:
Erythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact
Mitoferrin-1 Expression in Patients with Erythropoietic Protoporphyria
Quantification of the Effects of Isoniazid Treatment in Erythrocyte and Plasma Protoporphyrin IX Concentration and Plasma Aminolevulinic Acid in Patients with Erythropoietic Protoporphyria
To participate in Clinical Diagnosis of Acute Porphyrias, there are two parts:
Part 1 is looking for 1st degree relatives of patients with confirmed DNA diagnoses of the acute porphyrias (the patients who are subsequently diagnosed with an acute porphyria through this study are then eligible to participate in the Longitudinal Study)- We are only recruiting for this part right now
Part 2 is looking for patients with mild elevations in urine porphyrins and symptoms consistent with acute porphyria but who do not have a confirmed diagnosis yet (again, patients who are subsequently diagnosed with an acute porphyria through this study are then eligible to participate in the Longitudinal Study)
For this study patients do not need to visit a participating center but it is preferred that they do
To participate in Hydroxychloroquine vs. phlebotomy for porphyria cutanea tarda :
Patients must have a biochemically confirmed diagnosis of PCT, these patients are also eligible to be in the Longitudinal Study however it is not required that they be in the Longitudinal Study to be in this study
They must also be over 18 years of age and willing to take precautions to prevent pregnancy 
For this study the patients need to visit a participating center

"Remember. Research is the key to your cure!"

International Porphyria Patient Day Read all about it!

Thursday - August 1, 2013 @ 13:03:06

The International Porphyria Patient Day, organized by the Swiss Society for Porphyria and the German EPP Patient Groupwas held on Saturday, May 18th, 2013. 

Video and Audio of the International Porphyria Conference are available by joining

On the video, representatives from patient groups introduce themselves; tell about the organizations in their respective countries and share patient testimonials.

Porphyria Argentina - Estela Y. Ferrari de Frassia
Porphyria Australia - Sean Hegarty
Porphyria Brazil - Bénie Maria Scandelari Bussmann
Alberta Porphyria Society (Canada) - Wendy Suave
Porphyria France - Sylvie Le Moal
Porphyria Spain - Joaquin Montoto
Porphyria Sweden - Kerstin Bjernevik
Porphyria United Kingdom - John Chamberlayne
American Porphyria Foundation - Desiree Lyon Howe
EPP Germany - Verena Schmeder
Porphyria Switzerland - Rocco Falchetto

The video also contains the medical presentations given at the meeting:

Acute porphyrias : Diagnosis, complications and treatment options - Pr Jean-Charles Deybach, MD, PhD

Erythropoietic Porphyria : Treatment options and long-term complications - Staffan Wahlin MD, PhD

Pain in Porphyria - hepatic and cutaneous - Dr. Matthias Firnau

Also, Mark the date: August 11th for the Living with EPP Webinar hosted by RareConnect
Sunday, August 11th at 20.00 CET (Barcelona time), 14.00 EST (New York)
Enter as a Guest with your Name, no password required. Connect your headset.

Mission: "People living with EPP and their families come together to share their stories, realize their similarities, share their strategies, and have a virtual meeting. There will be plenty of time for discussion."

"Remember. Research is the key to your cure!"

Here is an experience with Children with EPP! This has been brought to you by Rare Connect.

Monday - July 29, 2013 @ 16:19:22

Bringing up 2 Children with EPP

Listed below is the brief story of our journey with EPP.
Written by Terryb, published 2 months ago.
Bringing up 2 Children with EPP
We have 3 teenage children. the two eldest have EPP and the youngest carries the gene. We first noticed problems with our two eldest on holidays to Spain when even when not in the sun and covered with factor 50, they complained of burning hands. Both my daughter and son suffered scarring and skin flaking away from their hands and feet and in one very alarming incident my daughters face blew up like a balloon and the skin across it split.
We naturally started to consult medical professionals very quickly, but it took about 3 years for the full diagnosis to come through. Once we had the diagnosis of EPP the children attended Hope Hospital in Manchester where their care has been excellent.
It has meant us making some changes to the way we live our lives to ensure that they are both protected from the sun, but over time they have learnt to manage their condition within reason. They keep well covered, in the shade and when we holiday they swim in early evening or we choose hotels with indoor pools. Though I must admit looking back at pictures of them sitting in the sun in their early years makes me shudder now that I know what it must have been doing to them, even with hats and sun cream on.
We are still looking to erradicate EPP from their lives and potentially from the lives of their children when the time comes. Seeing them struggle with burnt and cracked hands and faces has been horrible and not something I want to see again.
The conference in Luzern was a huge step forward in our understanding of Porpyhria, its short term and long term impacts and also potential treatments and it was well worth the trip and all the effort put in by everyone to organise it. So many thanks to Rocco and Jasmine.
"Remember.Research is the key to your cure!"

How Does a Heat Wave Affect the Human Body?

Sunday - July 28, 2013 @ 19:37:05

Excellent and informative article I had to share.
How Does a Heat Wave Affect the Human Body?
Some might like it hot, but extreme heat can overpower the human body. An expert from the CDC explains how heat kills and why fans are worthless in the face of truly high temperatures

CAN WE REALLY BEAT THE HEAT?: The human body can face a meltdown if exposed to a prolonged heat wave. Heat exhaustion and heat stroke are just some of the effects of hot weather on the body.Image:
Climate change promises to bring with it longer, hotter summers to many places on the planet. This June turned out to be the fourth-hottest month ever recordedgloballyscientists are reporting. With more heat waves on the horizon, and a big one currently sweeping much of the U.S., the risk of heat-related health problems has also been on the rise.

Heat exhaustion is a relatively common reaction to severe heat and can include symptoms such as dizziness, headache and fainting. It can usually be treated with rest, a cool environment and hydration (including refueling of electrolytes, which are necessary for muscle and other body functions). Heat stroke is more severe and requires medical attentionit is often accompanied by dry skin, a body temperature above 103 degrees Fahrenheit, confusion and sometimes unconsciousness.

Extreme heat is only blamed for an average of 688 deaths each year in the U.S.,according to the Centers for Disease Control and Prevention (CDC). But when sustained heat waves hit a region, the other health ramifications can be serious, including sunstroke and even major organ damage due to heat.

The Chicago heat wave in the summer of 1995 killed an estimated 692 people and sent at least 3,300 people to the emergency room. An observational study of some of those patients revealed that 28 percent who were diagnosed at the time with severe heat stroke had died within a year of being admitted to the hospital, and most who initially survived the high temperatures had "permanent loss of independent function," according to a 1998 study of the heat wave, published in Archives of Internal Medicine.

As temperatures linger above our bodies' own healthy internal temperature for longer periods of time, will we humans be able to take the heat? We spoke with Mike McGeehin, director of the CDC's Environmental Hazards and Health Effects Program, to find out just whyand howa warm, sunny summer day can do us in.

How do humans cope with hot, hot weather?
The two ways we cope with heat are by perspiring and breathing.

So is it the heat or humidity that is the real killer?
The humidity is a huge factor. If you have tremendously high temperatures and high humidity, a person will be sweating but the sweat won't be drying on the skin. Thats why it's not just heat but the combination of heat and humidity that matters. That combination results in a number called the apparent temperature or "how it feels".

Obviously there are thresholds for both temperature and humidity above which we see an increase in death, and it's going to be a different temperature in Phoenix than it's going to be in Chicago.

The other major factor in terms of temperature that causes both mortality and morbidity is the temperature that it falls to in the evening. If the temperature remains elevated overnight, that's when we see the increase in deaths. The body becomes overwhelmed because it doesn't get the respite that it needs.

What kind of impact does extreme, sustained heat have on the human body?

The systems in the human body that enable it to adapt to heat become overwhelmed. When a person is exposed to heat for a very long time, the first thing that shuts down is the ability to sweat. We know that when perspiration is dried by the air there is a cooling effect on the body. Once a person stops perspiring, in very short order a person can move from heat exhaustion to heat stroke.

What happens in the transition from heat exhaustion to heat stroke?

It begins with perspiring profusely, and when that shuts down, the body becomes very hot. Eventually that begins to affect the brain, and that's when people begin to get confused and can lose consciousness.

The analogy we use is if you're driving a car and you notice that the temperature light comes on, what's happening is the cooling system of the car is becoming overwhelmed. If you turn off the car and let it cool eventually you can start driving again. But if you continue to drive the car, the problem goes beyond the cooling system to affect the engine, and eventually the car will stop.

What other areas of the body does this extreme overheating affect?
As the body temperature increases very rapidly, the central nervous system and circulatory system are impacted.

In places where there have been prolonged heat exposures, there is probably a broad impact on many organ systems. From heat waves that have been studied, like in Chicago, there are increases in emergency department visits and hospital stays for medical crises that are not normally associated with heat, such as kidney problems.

But it really hasn't been studied very much. One of the reasons for that is the main focus of the studies has been on mortality from heat waves, and there hasn't been that much focus on morbidity. That would take looking at people who are hospitalized from heat exhaustion or heat stroke and following them into the future. 

Before someone gets full-blow heat stroke, what are the body's early reactions to excessive heat?
Heat rash and muscle cramps are early signs of people being overwhelmed by heat. If those aren't dealt with, it can lead to more severe symptoms. 

Cramping of muscles can be for a number of different issues, including electrolytes not getting to the muscles. 

People should be aware that their skin turning red and dry are indicators that heat is impacting them. 

Who is the most vulnerable to extended high temperatures? 
We know the risk factors for dying from heat are urban dwellers who are elderly, isolated and don't have access to air conditioning. Obese people are at increased risk as are people on certain medications. And people who are exercising or working in the heat, who don't meet those criteria, can be at risk. 

What medications can make the body more susceptible to extreme heat? 

In the study from the 1995 Chicago heat wave, we found that diuretics for high blood pressure were some that did, and beta blockersa number of studies showed that people taking them could be at increased risk. 

There are some studies that have shown that certain mental health medications may impact a person's ability to deal with the heat. But that's a difficult one to get at. When you look at the number of people who die in a heat wave and the number of people who are taking those medications, the numbers can get pretty small pretty quickly. 

What's the hottest temperature a healthy human can tolerate?

We don't know thatno one knows that. There are different humans, different humidities, different types of temperature. 

Have we not evolved to cope with super hot weather? 

Certainly society has evolved in dealing with the heatand that has been in the development of air conditioners. The number-one factor that ameliorates death from heat is access to air conditioning. 

And I've read that fans don't work to prevent overheating in really hot temperaturesâ?¦
Not only does it not work, it actually makes it worse. We compare it to a convection oven. By blowing hot air on a person, it heats them up rather than cools them down.

Are modern humans neglecting to do something our ancestors did to survive the heat?
I think it's always been a problem. There's history over hundreds of years of people dying of heat. Philadelphia in 1776 had a major heat wave that caused deaths. 

We're also living to older ages, and we're more urban now than we have been in the history of the human species. That intense crowding can combine with the heat island effect in big cities. Our elderly people are also more isolated than they have been in the past, so those factors can play a part, too. 

The IPCC, the Intergovernmental Panel on Climate Change, the thing that they are most comfortable in predicting, that the science is most solid for, is the increase in many parts of the world in the duration and intensity of heat waves.

"Remember.Research is the key to your cure!"

APF Announcement

Friday - July 26, 2013 @ 17:27:02

Everyone!!!! **** The T-shirts are almost all gone here is what I have left in sizes:
XL-1XL= 12, L-1, M-12, S-7, so if you would like to place an order leave your order @ along with method of payment and full mailing address. We accept Visa, MC, Money order and personal check.
"Remember.Research is the key to your cure!"

Fruits & Veggies Then & Now

Wednesday - July 24, 2013 @ 11:24:56

I found this really interesting.  I am a big fan of fruits and veggies.  I encourage you to read this over.

Are Fruits and Vegetables Less Nutritious Today?

Studies suggest that today's fruits and vegetables might be missing some key nutrients. Find out why, and discover shopping and cooking techniques that preserve nutritional value.

Medically reviewed by Lindsey Marcellin, MD, MPH
A number of studies have explored the phenomenon of declining nutrients in fruits and vegetables, but the one that garnered the most media attention was led by Donald R. Davis, PhD, at theUniversity of Texas in Austin, and was published in HortScience. Among Daviss findings, one of the most consistent was that a higher yield of crops in other words, more crops grown in a given space almost always resulted in lower nutrient levels in the fruits and vegetables. Whats more, the median mineral declines among a variety of fruits and vegetables could be fairly significant, ranging from 5 to 40 percent, with similar declines in vitamins and protein levels.
Higher yield is one reason behind the decline, but severalnutrition experts say it's not the only one. The soil itself has been over-harvested, meaning that over years of use and turnover of soil, it becomes depleted in nutrition, says Michael Wald, MD, an integrated medicine specialist in Mount Kisco, N.Y. All crops growing upon depleted soil must therefore be depleted in nutritional content.
Cherie Calbom, MS, a clinical nutritionist and author of The Juice Lady's Living Foods Revolution, sees it as a bigger problem that extends to many aspects of modern farming. Our poor farming practices are leading to sick plants, depleted soil, and a need to use higher and higher doses of pesticides and herbicides to ward off what healthy plants would naturally ward off, she says. We are heading toward a dust bowl in many parts of the country if nothing changes.
Despite these concerns, Janet Brill, PhD, RD, a nutritionist and author of Cholesterol Down, its still critically important to eat lots and lots of fruits and vegetables, and these developments shouldnt discourage you from doing just that. People should be concerned about one area of fruits and vegetables and one area only: to eat lots more of them each day, cooked and raw, she says. After we have solved that problem [of consumption], then we can move on to any nutrition concerns about growing them.
5 Ways to Get the Most Out of Your Fruits and Veggies
There are still many steps you can take to ensure a healthy nutrient punch every time you include fruits and vegetables in your diet.
Go with locally grown. The key to getting more nutrients is eating food that spends less time traveling from the field to your table. The way to accomplish that goal is with locally grown produce, either from your own garden or from a local farmers market. Buy fresh, whole, and locally grown seasonal produce, Brill suggests. Try to purchase produce with the least amount of time from farm to table, as vitamins and minerals are lost over time as well as with cooking and handling.
Choose frozen. Your natural instinct when eating produce is to think that fresh is always better than frozen. But Brill says that this isnt necessarily the case. Sometimes the veggies frozen right after harvest have retained more nutrients than those fresh veggies that have taken forever to get to your plate, she explains.
Dont judge a book by its cover. Big, shiny fruits and vegetables sure look good and grab your attention in the supermarket, but just because theyre beautiful doesnt mean theyre better for you. For example, organic apples may be smaller and not quite as pretty, but their pesticide levels are likely to be lower.
Keep them rough. When it comes time to prepare those fruits and vegetables for eating, bigger, rougher pieces of produce may have the nutritional edge over finely chopped and sliced options. Keep chopping to a minimum, Brill advises. The greater the exposure of the fruit or vegetable to air, the greater the loss of nutrients.
Minimize cooking time. Though there are some exceptions (the lycopene in tomatoes, for example), the less most fruits and vegetables are cooked, the more nutrients they retain. So eat your fruits and vegetables raw whenever possible. When you do cook them, keep the cooking time to a minimum and avoid too much contact with water. Cooking methods that are quick, with a minimum amount of liquid, will help to preserve nutrients, Brill says. Steaming, blanching, and stir-frying are all great ways to cook vegetables quickly and retain valuable nutrients. Keep veggies crisp never overcook or boil in water until soggy.

It may take a bit more effort to find fruits and vegetables as nutrient-rich as they were 50 years ago, but with more local farm stands cropping up, seasonal choices are getting easier to find and are certainly more delicious.

"Remember.Research is the key to your cure!"

Big News Reports from the American Porphyria Foundation

Tuesday - July 23, 2013 @ 21:17:38

The APF Website has Received a Makeover.

We are pleased to announce the release of the Updated APF website.

Some of the new sections Include:
  • New Rotating Members Photo's and Quotes Gallery on the Home Page.
  •  New "Porphyria Awareness and Fundraising Events" section with both Past and Present Events.
  •  New informative Videos on the Home Page and You Tube videos on a variety of subjects.
  •  New links to special educational sections
  •  And a host of other informative resources
  •  An enhanced Image Gallery. 
  •  Additional Member and Panhematin stories.  
  •  Previews of the video, Porphyria Live and much more  

Take a look and we hope you all benefit from the vast resource of Information.  Note the medical information on the APF website was written by Porphyria Experts: .  

Watch the website for more exciting new features which will be added over the next month, including easy access to Desiree's book, Porphyria , A Lyon's Share of Trouble and an Art Gallery of our members talent. 

Please submit your own stories, paintings, poetry, and videos or You Tube videos.  The APF is your foundation.  We want to add more about you.  Contact Yvette at the APF at or call 866.apf.3635.

NEW Caretaker Support Forum.

Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forum for spouses or partners who help their loved one cope with porphyria.  To read more about Warrens story as a caretaker for a loved one with AIP view here.

The Caregiver Support Group strives to provide a forum to ask questions, share advice, experiences and provide a sounding board for those going through similar circumstances.

Our goal is to eventually provide multiple resources to assist caregivers in their day-to-day lives. This is your community and your input will help shape this service. Whether you are a spouse, partner, relative or friend of a porphyria patient, we want to hear from you. Contact the American Porphyria Foundation or email us at for more information.

We respectfully request that only caregivers of patients in the active process of diagnosis or with a diagnosis of a porphyria participate in this group.

Official APF T-Shirts are Still Available.

Thank you to all of you who have already purchased their APF T-Shirts and Porphyria Live DVD's.  The interest you all have shown is very exciting for us. They are going fast. Order yours today! For instructions on how to order yours view here.

New Safe/Unsafe Drug List Mobile Web App.

Screenshot_mobile web app safe unsafe list

We sincerely appreciate the hard work of APF member, Mr. Nicholas Frias , who designed a fantastic Mobile Web App for the Safe/Unsafe Drug List for the Acute Porphyrias.  He combined the APF list and the European and South African lists to create an easy to search list. Read more


"Remember.Research is the key to your cure!"

Summer vacation a personal experience from Natalia Nikova

Tuesday - July 23, 2013 @ 21:06:15

It's summer time have you taken a vacation yet? Please read the reminders off a new personal experience from Natalia Nikova

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

Beware of Mountains
My name is Natalia Nikova.  I was born in Russia in St. Petersburg.  I have AIP.
I went through horrible surgeries and sufferings in Russia before I was properly diagnosed.  That happened when I was between 25 and 30 years old.
After that I was receiving capsules of Adenil through the Red Cross for about four years and injecting myself two times a day.  My recovery was very slow but at the age of 39 I started to feel better and I was able to immigrate to the USA with my daughter and my mother.
I managed to change my profession from Choral conductor to a computer programmer to support my family and my porphyria's symptoms almost disappeared. Now I am 63 years old and in August 2004 all of a sudden I had a reminder. I and my husband went to Peru.  I got immediately sick in Cusco from the high altitude but the altitude sickness was greatly aggravated by porphyria. In addition to a headache and shortness of breath I had nausea, high fever, high blood pressure and grazing pain in my stomach. In fact I became so sick that we had to change our entire itinerary and move to lower regions in Peru.  That was not too much fun because I am a bird watcher I was looking forward to go to Colca Canyon to see Andean Condor.  Even after we returned from Peru I was sick for two weeks with general weakness.
I hope that sharing this story will help some people in planning their vacation.
 "Remember.Research is the key to your cure!"

FDA Warns of Sunscreen Spray's Flammability Risk

Friday - August 23, 2013 @ 18:24:42

FDA Warns of Sunscreen Spray's Flammability Risk

SUNDAY, July 21 (HealthDay News) -- Certain sunscreen sprays worn close to an open flame may pose a risk of catching fire, the U.S. Food and Drug Administration warns.
The agency said it knows of five incidents in which people wearing sunscreen spray near sources of flame suffered significant burns that required medical treatment. The products involved in these incidents were recalled and should no longer be on store shelves.
However, many other sunscreen spray products contain flammable ingredients, commonly alcohol. The same is true for some other spray products -- including insect repellants and hairsprays -- and even some non-spray sunscreens, the FDA said.
"Based on this information, we recommend that after you have applied a sunscreen spray labeled as flammable, you consider avoiding being near an open flame, sparks or an ignition source," Dr. Narayan Nair, a lead medical officer at the FDA, said in an agency news release.
Many flammable products have a label warning against their use near an open flame. Never apply a product labeled as flammable when you are near a source of flame.
However, the five incidents reported to the FDA occurred after the sunscreen spray had been applied. The sources of flame included lighting a cigarette, standing too close to a lit citronella candle, approaching a barbecue grill and doing welding.
These incidents indicate that catching fire is possible even if you believe you have waited long enough for the sunscreen to dry and your skin feels dry, the FDA said.
"Remember.Research is the key to your cure!"

New shipment arrived today! APF-T-shirts & APF videos selling out get yours today.

Thursday - July 18, 2013 @ 13:09:47

Back by popular demand!  New shipment in. These will not last long.  They are going quick.  Did you get your video & T-shirts yet?  Support the APF by making your purchase today!

We are pleased to announce that the official APF T-Shirts have arrived!

Our hope for the T-shirts is that you all will buy and wear them to help promote and raise questions about Porphyria and to raise funds for the Dr. Packets, pain Management docs, among many other publications we make available at no cost.
Amy Chapman is heading up the T-shirt project. There are also some copies of Porphyria Live for sale. For information on how to order the T-Shirts and/or the Porphyria Live Video see below.

Porphyria Live DVD Introduction

You can order a T-shirt and/or Porphyria Live DVD by sending an email order
I must have name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one. And include the quanity of the Porphyria Live Video.

To accept payment: One of two options I can accept Paypal VISA/MC only I must have full name on the card, account#, exp. date, 3 digit code on back of card CVV- 
I will accept money orders and personal checks.  You must have name/address/phone # on them. 
They can be mailed to me:
Amy Chapman
10475 Gandy BLVD N. Unit 3417
St. Petersburg FL 33702.  

*The APF will not take orders or calls about T-shirts*
Once I receive the order I will ship out your product.

All products will be shipped out Priority mail with tracking.  Each person also will receive a receipt with T-shirts.

T-shirts come in the following sizes S, M, L XL, 2xl, 3xl they are 100% cotton, heavy not thin, and very durable.  No other sizes.  

The price per T-shirts is $19.00/shirt. This covers the shirt, shipping and tracking, and priority mail.  International orders: I will have to consult first with the post office for shipping rates.
The price of the Porphyria Live DVD is $10.00 each. Shipping is included in the price.

100% of all funds received will go back to the APF

"Remember.Research is the key to your cure!"

APF Website received a makeover! Check it out.

Wednesday - July 17, 2013 @ 11:29:00

The APF Website has received a makeover!
Take a look at some of our new features like the New Rotating Members Photo's and Quotes Gallery on the Home Page.

There is a new section "Porphyria Awareness and Fundraising Events" A list of Past and Present Events.

Among many other things.
Take a look and we hope you all benefit from the vast resource of Information provided and screened by Porphyria Experts.

The APF Website has received a makeover!
Take a look at some of our new features like the New Rotating Members Photo's and Quotes Gallery on the Home Page.

There is a new section "Porphyria Awareness and Fundraising Events" A list of Past and Present Events.

Videos on the Home Page, Among many other things.

Take a look and we hope you all benefit from the vast resource of Information provided and screened by Porphyria Experts.

"Remember.Research is the key to your cure!"

Living with EPP webinar

Wednesday - July 17, 2013 @ 10:30:03

Living with EPP webinar

We'd like to invite you to a webinar: 

"Living with EPP" 

Sunday, August 11th at 20.00 CET (Barcelona time), 14.00 EST (New York) 
Enter as a Guest with your Name, no password required. Connect your headset
Mission: People living with EPP and their families come together to share their stories, realize their similarities, share their strategies, and have a virtual meeting. There will be plenty of time for discussion.
We hope you can join us on August 11! If you're on holidays, don't worry, we'll record it and post the video here afterward.
"Remember.Research is the key to your cure!"

Offical APF T-Sirts Ordering Information below. Order your TODAY.

Tuesday - July 16, 2013 @ 20:59:49

We are pleased to announce that the official APF T-Shirts have arrived!

Our hope for the T-shirts is that you all will buy and wear them to help promote and raise questions about Porphyria and to raise funds for the Dr. Packets, pain Management docs, among many other publications we make available at no cost.
Amy Chapman is heading up the T-shirt project. There are also some copies of Porphyria Live for sale. For information on how to order the T-Shirts and/or the Porphyria Live Video see below.

Porphyria Live DVD Introduction

You can order a T-shirt and/or Porphyria Live DVD by sending an email order
I must have name, complete address, and phone number.  Also include the Quantity of T-shirts and the size for each one. And include the quanity of the Porphyria Live Video.

To accept payment: One of two options I can accept Paypal VISA/MC only I must have full name on the card, account#, exp. date, 3 digit code on back of card CVV- 
I will accept money orders and personal checks.  You must have name/address/phone # on them. 
They can be mailed to me:
Amy Chapman
10475 Gandy BLVD N. Unit 3417
St. Petersburg FL 33702.  

*The APF will not take orders or calls about T-shirts*
Once I receive the order I will ship out your product.

All products will be shipped out Priority mail with tracking.  Each person also will receive a receipt with T-shirts.

T-shirts come in the following sizes S, M, L XL, 2xl, 3xl they are 100% cotton, heavy not thin, and very durable.  No other sizes.  

The price per T-shirts is $19.00/shirt. This covers the shirt, shipping and tracking, and priority mail.  International orders: I will have to consult first with the post office for shipping rates.
The price of the Porphyria Live DVD is $10.00 each. Shipping is included in the price.

100% of all funds received will go back to the APF

"Remember.Research is the key to your cure!"

Feelings~ This is how I feel sometimes

Monday - July 15, 2013 @ 23:31:36

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"Remember.Research is the key to your cure!"

Warren Hudson ~ Caretaker

Tuesday - July 23, 2013 @ 10:28:39

Warren Hudson ~ Caretaker

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)
Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forum for spouses or partners who help their loved one cope with porphyria. If you would like to participate in the Caretaker group, please contact the APF for Warren's contact information. Below is Warrens story.

"Porphyria is a large part of my life effecting relationships and day-to-day activities.  It controls my ability to work, what kind of jobs I can take, and how I care of my family.  Porphyria cost me friendships and takes a great mental and physical toll. I am extremely afraid of the simple act of visiting new doctors. I go prepared with questions and the expectation of disappointment or rejection. The horror related to a hospitalization is something I am unable to put into words. I know my story is common for those suffering with one of the Acute Porphyrias. However, I do not have Porphyria. I am the husband and caregiver of someone with Acute Intermittent Porphyria (AIP). My experience lacks the physical pain but gives me a front row seat to hers and confronts me with an overall feeling of helplessness.

The role of caregiver for a Porphyria patient has been largely unexplored. Obviously, the patient is everyones primary concernas they should be our focus. However, a strong healthy caregiver provides better long-term support. It is all too easy for both caregiver and patient to focus on the patient. In my case, this comes with consequences. At first, both my wife and I treated AIP as something separate from our relationship and our lives. This was unrealistic and fed many disappointments for both of us when we realized the disorder could not be ignored. We strive to understand how it is part of our lives and work together to limits its effect. I wanted to share some experiences, provide insight and hopefully help others in my position.

My wife and I were friends since the age of fourteen, and AIP was never a topic of conversation. I vaguely remember her talking about a hospitalized cousin with extreme pain, paralysis and an undiagnosed illness. However, this was a passing conversation in our mid-teens. Fifteen years after we initially met, her AIP symptoms started. I saw my future wife get increasingly depressed and her frustration build. Often, I was the closest person around taking the brunt of her anger and frustration. In these instances the caregivers role can be very lonely.

In 2003 my wife had an extremely bad attack. I ended up taking off of work for a month, sleeping on the floor next to her in the hospital and being my wifes advocate with nurses and doctors when she was unable to speak for herself. Over the years, this scene has replayed numerous times. I had hospital doctors tell me my wife was faking her symptoms or the pain she described was not possible. I have been called an enabler and accomplice. Despite this, I attempt to continue to advocate for my wifes care and ensure medications are appropriate and her needs met. In extreme cases, I document everything from the time a nurse walks in the room, take pictures of allergic reactions, list medications given and what was said by whom. Every time I go through this process it causes me profound sadness. It seems like an injustice that anyone should have to jump through these hoops to ensure medical care is adequate. I end up feeling like an administrator rather than a husband, but I have caught too many mistakes to stop.

A few months ago I had the opportunity to have breakfast with another husband of an AIP patient. In a year I speak with doctors, healthcare providers, insurance personnel and other Porphyria patients, but rarely do I get to speak to a fellow caregiver. We shared our experiences, fears, and frustrations. The ability to just talk and listen without judgment was cathartic. In these moments, I am reminded my wife and I are not the only people dealing with these issues. No matter how bad it seems, there is someone else who has gone through something similar. Several years ago I was part of a group of patients and spouses sharing our experiences with the makers of Panhematin. I was struck with how familiar each patients story sounded. Away from the group, a few spouses and I shared some of the burdens AIP placed on each of our relationships. These too sounded very familiar.

Every relationship has stresses, but AIP presents some that are new and amplifies others. One of my biggest problems has been its effect on my career. I was offered a position with a company in the United Arab Emirates, and had to turn it down because their Ministry of Health would not allow my wife into the country due to medications she might require. AIP affected our ability to travel to visit friends or take vacations. The risk my wife would become ill and need treatment while on the road is ever-present. We lost friends who felt they were blown off because we did not travel to see them. Some of our friends did not understand why, during periods when my wife was extremely ill, we failed to call or write. Even some family withdrew because they simply did not understand our limitations.

I think one my biggest problems, and generally Porphyria caregivers, is that we do not talk enough to others in a similar position. We tend to hold back, bottle up our emotions, focus on our loved ones and in my case, internalize my frustrations and fears. This can be isolating and unhealthy. I took my personal concerns, pains or illnesses and measured them up against what my wife experienced. In comparison, my problems seemed petty. If I got sick, I treated my illness like something I should push through or shrug off. If I physically could not go to work or do something for my wife I felt guilty because I knew she got out and did things when a day before she was unable to walk. My focus on caring for my wife and not caring for myself affected my health. I gained a large amount of weight and became increasingly depressed.

Even when those closest to me were concerned and wanted to talk, I held back details because it felt like I was betraying my wife by discussing her AIP and how it affected me. I am not suggesting these are common experiences of all caregivers, but as a patient, realize these people by your sides are not passive observers but right there in the trenches with you. It is very easy for those of us in the caregivers role to become immersed in the problems of our loved one and neglect ourselves.

The irony of putting someone elses needs ahead of your own is that both people suffer. It is critical that those of us in the caregiver role take the time to ensure our own needs are being met and that we do not neglect the most important person, ourselves. In order for our spouses, family, friends or loved ones to get the care they need it is imperative that we take care of ourselves both mentally and physically. Reach out to other caregivers if you need advice or a sympathetic ear. Get involved in things that bring you joy. These have been hard lessons for me to learn, and something I struggle with on a daily basis. If you remember anything else, please know neither the patient nor the caregiver is alone in this journey."

  • "Remember.Research is the key to your cure!"

How to Become a Very Healthy Person-Total Body, Mind, Makeover You deserve it!

Wednesday - July 10, 2013 @ 17:10:30

What great suggestions! Total Body, Mind, Makeover You deserve it!  Feel Well Everyone

Want to become a healthier person? It's all about making gradual changes. Following the tips in this article offer several benefits for you: lower risk of several cancers and diseases, a possibly leaner frame, and the chance to live a long and happy life.

  1. 1
    Get lots of sleep. In order to maintain a healthy body, you'll need 8-10 hours of sleep every day. This keeps you awake and alert, so you don't have to drink caffeine and sugar-loaded energy drinks. If you are a kid and have early school times, go to sleep earlier on school nights.

  2. 2
    Laugh and smile! Smiling a lot makes your face look younger and it feels great. If you laugh a lot, it has been scientifically proven to keep you healthier.

  3. 3
    Do nothing. Staying in a dark, quiet place without having any stressful thoughts for about ten minutes will leave you feeling refreshed. If you just relax, you will feel better and probably keep feeling good through the day. Just do this a couple of times a day.

  4. 4
    Eat more fruits and vegetables. Fruits and vegetables are an essential part of a healthy diet. Try to get at least 5-9 servings a day.

  5. 5
    Drink water! Good old H2O is key in making you run throughout the day. Try drinking 8 eight-ounce glasses of water each day. It helps you re-energize and keep going. Not drinking enough fresh water leads to acne, headaches, and even dehydration. Do this, and you'll stay in good condition.

  6. 6
    Stretch! It feels great! From when you wake up in the morning, to your gym class, this easy form of muscle exercise warms you up and makes you more flexible. If you continuously stretch each day, you will end up being really flexible and nimble. It keeps you running longer and gives you strength.

  7. 7
    Run and jog! This doesn't necessarily mean run five miles every morning, but jogging or running for about 10 minutes at an easy pace definitely will keep you in shape. Try jogging for about 10 minutes 2 times a week. It will keep your muscles strong and fit every day. Don't ever run for an hour and then suddenly stop and sit on the couch for another hour. This will give you terrible cramps and will make it so it hurts to walk the next day. Slowly kick down the pace to a walk, and take deep breaths. Running will get you that A in gym class, trust me!

  8. 8
    Challenge yourself. If you got 10 push-ups as your maximum, try going for 12! Little challenges like this keep your body nice and fit.

  9. 9
    Do something you love. Play with a pet, go swimming, or jump on a trampoline! Doing things you love to do keep you in a good mood, and make you happier. If you had a bad day at school, ride a bike and take out your anger. Not only is this fun, but it lets you be yourself for awhile. Try it!

  10. 10
    Feel good about yourself! There is always going to be someone in the room who does at least one thing better than you, so don't compare yourself to other people! Find things you are good at, and use your talents!

  11. 11
    Accomplish something. This will make you feel victorious! Performing a song or using your talents to amaze someone else makes you feel great!

  12. 12
    Get a little exercise everyday. This will not only make you feel better, and make you look better, but help you to get through the day.

  13. 13
    Be cool - Don't take things too seriously! Be laid-back and open minded, explore new things, e.g. new cultures.

    "Remember.Research is the key to your cure!"

Do you have a Service Dog, Companion Dog or a Pet?

Monday - July 8, 2013 @ 10:35:00

Do you have a Service Dog, Companion Dog or a Pet?

Since I have Acute Intermittent Porphyria and have two loving & loyal Service Dogs they are so very important to me, they keep me protected, they can sense danger or harm sometimes before I can even tell if something is going to happen and sometimes we just play and hang out.  A few years ago we decided to have pets in our home, my husband never had pets when he was growing up but I grew up with Dogs & Cats.  So we decided to adopt from our local shelter.  I'm sure some of you can imagine how appreciative and loyal they are.  At the time of adoption though it was tough from training, discipline, keeping them clean and so much more.  It took so much time and effort sometimes I wondered "Is it really worth it" after all Dogs just wanna have fun! Mixed in with a rare and painful disease I was not always up and ready to go like them.  My husband helped out so much to but I was worried.  My dogs in the end, from puppies to adult and senior I can say they have helped us through the difficult times.  From keeping an eye on me, alerting my husband if something is wrong, opening doors, laying with me when I just want to give up at times, a loyal look, a wagging tail and so much love just as they like to receive love and affection they love to give it.  They will be with you in your heart always.  

So if you need a fellow mate who can help you, think about your circumstances. See who you can share your love with and how your will have a forever "doggie mate".

Service/Assistance Animals
What is a Service Animal?Service animal means any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability.  Other species of animals, whether wild or domestic, trained or untrained, are not service animals for the purpose of this definition.  The work or tasks performed by a service animal must be directly related to the handlers disability.  Examples of work or tasks performed include, but are not limited to, assisting individuals who are blind or have low vision with navigation and other tasks, alerting individuals who are deaf or hard of hearing to the presence of people or sounds, providing non-violent protection or rescue work, pulling a wheelchair, assisting an individual during a seizure, alerting an individual to the presence of allergens, retrieving items such as medicine or the telephone, providing physical support and assistance with balance and stability to individuals with mobility disabilities, and helping persons with psychiatric and neurological disabilities by preventing or interrupting impulsive or destructive behaviors.  The crime deterrent effects of an animals presence and the provision of emotional support, well-being, comfort, or companionship do not constitute work or tasks for the purpose of this definition.    (Service animal as defined by the ADA, Title III, subpart A 36.104 definitions, July 2010)
 All service dogs are granted access by Federal and state laws.
Service Dog Categories
Service dog which assists an individual who has a mobility impairment with tasks including, but not limited to, providing balance and stability, retrieving items and pulling wheelchairs.
Dog Guide which assists an individual who is blind or visually impaired with tasks such as, but not limited to, aiding in navigation and alerting the individual to dangers such as moving cars.
Hearing Dog which assists an individual who is deaf or hearing impaired by alerting the individual to the presence of sounds or people.
Alert/Response Dog which alerts an individual to a seizure or other medical condition.
Psychiatric Service Dog which aids an individual with a cognitive, psychiatric or neurological disability.

Therapy dogs, emotional support dogs and companion dogs are NOT service dogs under the ADA.
What Is the Difference Between a Service Dog and Therapy, Emotional Support or Companion Dog?
A service dog must be individually trained to perform work or tasks directly related to the handlers disability.
A therapy and emotional support dog merely provides comfort to an individual in some fashion.  Therapy dogs are often the pets of the therapist or psychiatric personnel of the particular institution or hospital where they bring comfort.   Therapy and emotional support dogs are allowed in housing under the Fair Housing Act (FHA), but are not permitted in public places as are service dogs.
Companion dog is just another name for a pet dog.
Is It a Service Animal? or What questions can be asked?
A service dog is not required to wear something identifying it as such.  However, most service dogs wear a vest/cape or harness identifying it as a service dog or dog guide.  Service dogs may be of any size.  Certification cards are not required. Avest or other identifying clothing is not required.
Under the ADA, one may ask if the dog is a service dog and may ask what tasks the dog performs for the handler.
One may ask if the handler has a disability, but may NOT ask what that disability is.
Service Animal Behavior     (standards as set forth by ADI)
Under the ADA, a service dog may be removed from a public place for disruptive behavior.
A service dog must be under the control of the handler at all times.
A service dog must be on a leash at all times (some allowances are made under certain circumstances).
A service dog must not show aggression towards people or other animals.
A service dog does not bark, growl or whine.  (However, a service dog may be trained to bark in the case of an emergency effecting the handler)
A service dog does not solicit attention, food or other items from the general public, nor annoy any member of the general public.
A service dogs work does not disrupt the normal course of business.
Public Appropriateness:
       The dog is clean, well groomed, does not have an offensive odor and does not urinate or defecate in inappropriate locations.
Service Dog Etiquette
DONT  pet, talk to, make eye contact or distract the dog in any way.
DO  allow the dog to work without distraction.
DONT  speak to the dog when greeting a service dog team, speak only to the handler.
DO  ask for permission to pet the dog.  Under certain circumstances, the handler may permit it.
DONT  be insulted if your request to pet the dog is denied.
DO  realize that allowing the dog to greet you may distract the dog from its work.
Because these are friendly dogs, they enjoy attention, however, such distraction may interrupt the dogs work and could cause injury to the dogs handler.  Keep this in mind when tempted to pet or speak to a service dog
Service Dog Training
ADI (Assistant Dog International) requirements include, but are not limited to, the following:
The dog be specifically trained to perform 3 or more tasks to mitigate aspects of the clients disability.
Dog demonstrates basic obedience skills by responding to voice and/or hand signals for sitting, staying in place, lying down, walking in a controlled position near the handler and coming to the handler when called.
Dog  works calmly and quietly on harness, leash or other tether.
Dog is able to perform its tasks in public.
Dog must be able to lie quietly beside the handler without blocking aisles, doorways when possible.
[dog trainer information links here]

Federal laws
Americans with Disabilities Act (ADA) revised in July 2010
Federal Air Carrier Access Act of 1986.  The act requires air carriers to permit service animals to accompany persons with disabilities on flights (14 CFR 382.55 (a))
Fair Housing Act of 1988 (FHA)
New Hampshire Laws
Service animals defined.  (RSA 167-D:1)  Service Animals and search and rescue dogs.  (effective date Jan.1, 2012)
Unlawful to disguise a pet dog as a service dog (RSA 466:8 II)  It is unlawful to fit an animal with a collar, leash or harness of the type which represents that the animal is a service animal, or service animal tag issued under RSA 466:8  (effective date Aug. 12, 2012)
Licensing of service dogs (RSA 466:8)  This provides for free registration for the working life of a service dog (effective date Aug. 12, 2012).
No companion/pet dogs in restaurants (RSA 466:8)  A restaurant owner may allow his or her properly disciplined companion/pet dog inside his or her place of business.  Such dog shall be removed from any portion of the premises where members of the public are present in the event a service animal is present.  (effective date Jan. 1, 2012)
NEADS Dogs for Deaf and Disabled Americans
Paws With a Cause
Canine Assistants
Paws for Independence
Assistance Canine Training Services     (in Moultonboro)
Canine Companions for Independence
 Dog Guide Users NH  (This site contains dog guide training schools)
IAADP (International Association of Assistance Dog Partners)
ADI (Assistance Dogs International)
NH Service Dog Awareness Day   June 16
International Assistance Dog Week   Second week in August

                MY DOGS MAXWELL & MATTIE

Mobile Web App for Safe/Unsafe Drug List.

Thursday - July 4, 2013 @ 17:03:44

Screenshot_mobile web app safe unsafe list
We sincerely appreciate the hard work of APF member, Mr. Nicholas Frias , who designed a fantastic Mobile Web App for the Safe/Unsafe Drug List for the Acute Porphyrias.  He combined the APF list and the European and South African lists to create an easy to search list.

This Mobile Web App is very simple to use.   All you need to do is enter Mobile Web App for Safe?Unsafe Drug List into your mobile device web browser to access it.  Follow easy instructions to add the list to your home screen.

The desktop version works well, too.  Mr. Frias will be updating the list with the assistance of porphyria expert, Dr. Peter Tishler.  There is comment sections to track glitches in the system, so please feel free to add your comments, as Mr. Frias will continue to update the site.

This is a very special gift from Mr. Frias to people who have one of the acute porphyrias.  Please join the APF in sending him our sincerest thanks.

"Remember.Research is the key to your cure!"

On Sound Footing The Health of Your Feet

Thursday - July 4, 2013 @ 16:56:12

On Sound Footing
The Health of Your Feet

Illustration of a girl and dad sitting at the beach, with their bare feet in the foreground.
Your feet are pretty small, considering they have to support the entire height and weight of your body. But they can cause big problems. So pay some attention to your feet. 
Feet dont get any respect, says Dr. Marian T. Hannan, who studies foot disorders at the Institute for Aging Research at Hebrew SeniorLife. Theyre sort of the Rodney Dangerfield of the human body.
Each step you take involves a remarkably intricate network of bones, muscles, tendons and ligaments. That complexitycombined with all the weight they carryaccounts for why feet can be so prone to problems, including bone fractures, arthritis and plantar fasciitis, a swelling of the thick band of tissue that runs along the bottom of the foot.
If left untreated, foot problems may worsen. Eventually, the pain could interfere with your ability to do even the most basic things like walking up stairs or down the street. If pain alters the way you walk, it can lead to pain in your knees, hips and back as well. These problems can multiply, limiting your activity and affecting your quality of life.
Several things can contribute to foot pain or numbness. Sports and physical activity can cause your feet to hurt or become numb. Going too far, too fast or not warming up properly before exercise can set you up for painful or numbing injuries.
Excess weight puts extra stress on your feet. Poorly fitting shoes and other footwear are common causes of foot problems as well. 
Health problems can also affect the feet. Lack of feeling in your feet could be a sign of a serious illness, such as diabetes or a nerve disorder. See your health care provider if you have unusual numbness in your feet or foot pain that is severe, comes on suddenly, or doesnt improve with simple measures such as rest or over-the-counter pain medications.
The good news is that most foot disorders are either treatable or modifiable, Hannan says. The first thing that you can do is notice and keep track of it to see if theres a pattern to it. Once you figure out when you feel pain or numbness, she explains, talk to an expert who can help. 
How you walk and move affects your feet. Part of that is inherited. Not only do our feet look like our parents but we also walk like our parents, Hannan says. But you can modify your gaiteither with training or by changing shoes or using shoe inserts or pads.
You can help keep your feet healthy by wearing comfortable, well-fitting shoes. Wash your feet regularly (especially between your toes), wear clean socks and try to rotate your shoes to give them time to air out.
The more you exercise your feet, the better the blood flow is to the feet, and thats important for general foot health, Hannan says.
Walking is a great way to exercise your feet. You can also try specific foot exercises. Sit down and rotate your ankles in one direction, then the other. In bare feet, sit in a chair and curl your toes, then spread them out. This helps stretch and strengthen your feet to help you balance.
Seeing what someones foot looks like is incredibly informative, Hannan says. I think were going to be seeing a lot more health care providers paying attention to the feet, she predicts. 

 Remember..Research is the key to your cure!"

Weighing the Evidence to Prevent On-the-Job Pain

Tuesday - July 2, 2013 @ 20:26:55

Weighing the Evidence to Prevent On-the-Job Pain

It is a fact of life that job and career can be stressful. But some occupations also take a physical toll: persistent aching, throbbing or tingling in the hand, wrist, elbow, shoulder or neck.
Tony Cenicola/The New York Times

These insidious soft-tissue ailments variously known as repetitive strain injuries, cumulative trauma disorders or work-related musculoskeletal disorders include the debilitating nerve injury of carpal tunnel syndrome and the inflamed tendons of tendinitis. They not only can cripple a persons ability to earn a living. They may also make it difficult even to twist the lid off a jar, wash the dishes or turn the steering wheel.
Therapies like steroid injections, pain relievers or surgery can go a long way in alleviating pain. But treatments do not always offer a definitive cure, and injuries can recur. Prevention is therefore paramount.
To reduce the risk of injury, many workplaces, with help from researchers, have adopted ergonomic interventions: measures that tailor equipment or job routines to accommodate the human body. But while real-world success stories abound, scientists are still sorting through the evidence to determine which ergonomic measures really work.
Each year, more than 100,000 new cases of upper-extremity ailments are reported to the Occupational Safety and Health Administration. Problems are especially common among those who do heavy or frequent manual handling and lifting tasks, whether in manufacturing, construction, meatpacking or nursing care.
But repetitive strain injuries are perhaps most infamously associated with computer use. Widespread media coverage in the late 1980s and early 90s described an emerging plague of wrist pain from carpal tunnel syndrome in computer keyboard operators, writers and other office workers.
Skepticism arose over whether tapping on a keyboard, or other more forceful repetitive motions, could result in so much discomfort and disability. In the years since, researchers have established that exerting the hands, arms or shoulders in tasks that require high levels of force, many repetitions, awkward postures or high amounts of vibration increases the risk of musculoskeletal disorders.
But research in the last decade has established that carpal tunnel syndrome is not as common in computer users as people have believed in the absence of good evidence that it was, said Dr. Fredric E. Gerr, an occupational medicine physician and ergonomics investigator at the University of Iowa in Iowa City. And whether typing actually causes that disorder remains controversial, with some recent studies calling into question any significant connection.
Nonetheless, he added, The epidemiological evidence is overwhelming that the more people type, the more pain they have.
Neck and shoulder pain is the most common upper-extremity musculoskeletal problem among computer users. In a 2002 study tracking 632 computer users newly hired at major Atlanta companies, Dr. Gerr and colleagues observed that roughly 60 percent developed neck or shoulder pain in the first year, though the study did not track how long symptoms persisted. About 40 percent reported hand or arm symptoms, mostly from tendinitis. Only 1 percent developed carpal tunnel syndrome.
Younger generations growing up in the digital age are likewise joining the ranks of the typing wounded. Surveys at two universities found that 40 to 50 percent of undergraduates experience upper-extremity pain from using their computers. Colleges do not build dormitory furniture to be ergonomically adjustable, said Dr. Benjamin Amick, scientific director of the Institute for Work and Health in Toronto, who was a co-author of those studies. They build it to be indestructible.
In the business sector, many companies have made significant ergonomic improvements to the work environment, particularly in office and manufacturing settings, experts said. The idea is to minimize the stresses on hands, arms and shoulders.
For instance, in offices since the 90s, thick keyboards with stiff keys have given way to thinner, softer-touch versions. More attention is also paid to proper positioning of the keyboard, monitor and chair and to alternative types of computer mice. And in some automobile manufacturing plants, companies have modified assembly-line equipment to take some of the physical load off workers, along with making changes to rotate employees along the line.
Employers are recognizing that you need variety in the motions that you do, rather than constantly using the same exact muscles and nerves and tendons, said Barbara Silverstein, research director at the Safety and Health Assessment and Research for Prevention program of the Washington State labor department.
Such changes often pay off. In a soon-to-be published analysis of data from more than 5,000 Washington companies surveyed in 1998, 2001 and 2003, Dr. Silverstein found that businesses that reported implementing ergonomic measures also saw a decrease in musculoskeletal injuries and absenteeism rates.
In addition, according to the federal Bureau of Labor Statistics, the number of repetitive strain cases per 10,000 full-time workers dropped from a high of 41 in 1994 to 24 in 2001. (The agency has stopped tracking data in this category of repeated trauma disorders.) However, some researchers say that the data is unreliable and undercounts all occupational injuries and illnesses, because of problems with underreporting and with changes in recordkeeping requirements.
Meanwhile, scientists are seeking to build a base of rigorous evidence for ergonomic prevention strategies to convince skeptics of their value. But so far, reviews of the research have turned up limited or conflicting proof of positive benefits from such measures as stretching exercises or various workstation adjustments for computer users.
A major difficulty is that although many studies have demonstrated ergonomic measures to be helpful, few have been the kind of large, high-quality randomized controlled trials that provide clear-cut answers, said Dr. David Rempel, an ergonomics researcher at the University of California, Berkeley. Such trials are costly and complex to design well for workplace settings, he explained, and federal financing for workplace safety studies is scarce.
A lot of us are banging our heads against that wall now, Dr. Gerr said of the challenge of ascertaining which interventions work.. In the absence of definitive evidence, clinicians continue to exercise their best judgment in finding good solutions for their patients.

Cathleen Mouledoux and her battle with EPP

Monday - July 1, 2013 @ 18:28:15

Cathleen Mouledoux

Type of Porphyria: 
Erythropoietic Protoporphyria (EPP)
An EPP Family in Texas & Australia
Celeste as a young girlCathleen Mouledoux does not have EPP, but she knows the disease well because her daughter Celeste suffers from it.  The disease is in Cathleens husbands family, but Rene was never troubled by it, playing outside all the time as a child without anything more than a sunburn.  Rene was only tested for Erythropoietic Protoporphyria until after he and Cathleen found out their little girl had EPP.
Celeste had always shown low tolerance for the sun from the time she was a baby.  The first time Cathleen noticed the problem Celeste was playing outside in dappled sunlight, mostly shaded by a large tree, and suddenly started crying inconsolably.  Cathleen remembers it clearly because Celeste was not a fussy child, and when Cathleen took her indoors, she saw that Celeste was browned on her nose and her cheeks, just from the short time shed spent outdoors in the shade.  Celeste browned like that a few times as a child, and her skin would peel afterwards.  But instead of peeling like a sunburn, the skin would come off in big chunks.
Little Celeste and littler sister dressed for ballet recitalAs a toddler Celeste had a bad burning sensation in the skin on her hands when she was exposed to the sun.  Nothing Cathleen tried eased the pain, but there were no visible symptoms.  Then when Celeste was about four years old, she broke out in tiny little bumps that looked like bug bites after being out in the sun.  The family called them spider eyeballs and again Celeste suffered terrible pain with sun exposure.
When Celeste was 13 years old, her mother learned that two cousins had a disease called Erythropoietic Protoporphyria.  Their symptoms were pretty similar to Celestesall three kids would experience dramatic swelling in their hands and faces whenever they played in the sun.  Cathleen took Celeste for testing and the diagnosis was made.
Not being able to tolerate outdoor activities as a child was hard on Celeste as the family moved around in the warm and beach-friendly American South.  Cathleen remembers her daughter going to the beach with a group of friends one day as a teenager, going along with her friends and getting major sun exposure, and coming home bright red with her skin hugely swollen and painfulher arms were dramatically swollen all the way up to where the coverage from her t-shirt sleeves stopped and the swelling and pain took six weeks to heal completely.
The one reprieve came when Renes job moved the family to Australia for several of Celeste high school years.  Sun protection is a big topic in Australian public health notices because skin cancer is a major problem there.  So the family found significant public awareness and acceptance of the need to cover up.  Broad-brimmed hats were part of the kids school uniforms, and kids bathing suits often offered as much coverage as shortie wetsuits.
Like other people with all sorts of diseases, Celeste has sometimes chafed against the restrictions imposed by her EPP.  Cathleen remembers her daughter going to the beach with a group of friends as a teenager one summer day, and coming home with every exposed portion of her skin bright red, hugely swollen and painful.  The swelling and pain took six weeks to heal completely.  But now Celeste is a young woman in her early 20s and doing well.  She knows what she needs to do to protect her skin from the sun, and she takes precautions to keep herself healthy.

 Remember..Research is the key to your cure!"

RARE Webinar Series

Monday - July 1, 2013 @ 18:27:42

Global Genes  RARE Project Newsletter

Global Genes RARE Project and a host of partners are proud to continue our RARE Webinar Series, a series of educational webcasts this year on relevant and timely topics that should be of interest to the RARE community.

Our upcoming webinar will focus on Understanding Rare Disease Registries and will feature panelists coming at this topic from a different angle.  
Understanding Rare Disease Registries
Gain a clear understanding of design, implementation, and resource considerations that are the foundations of a successful registry
in this two-part webinar series.

Part 1, July 31, 2013
11:00 am Pacific Time

Register today - space is limited!
Part one of this series will cover the different types of registries and features of a robust patient registry, as well as options currently available for building a new registry or enhancing an existing one. The expert panelists will discuss resources for questionnaire design, collecting natural history information, considerations for drug development and the FDA, and informed consent and data sharing.

Panelists for Part 1 include: 
  • Dr. Steve Groft, Director of the Office of Rare Diseases (ORD)
  • Dr. Marshall Summar, Division Chief of Center for Genetic Medicine Research (CGMR)
  • Moderator:  Shira Kramer, President, GlobalEpi Research
I would encourage you to register and join the discussion.  I would also ask that you send this email along to your community and rare friends that might also be interested in the topic.

Special thank you to our content partner, GlobalEpi Research, for their help in coordinating this important discussion.

Thank you,

Carrie Ostrea
Advocacy Director / Parent Advocate

 Remember..Research is the key to your cure!"

Why gardening is good for your health

Monday - July 1, 2013 @ 11:30:20

Why gardening is good for your health

By Anne Harding,
July 8, 2011 7:44 a.m. EDT
Gardening can ease stress, keep you limber, and even improve your mood.
Gardening can ease stress, keep you limber, and even improve your mood.
  • Gardening gets you out in the fresh air and sunshine -- and it also gets your blood moving
  • Gardeners eat more fruits and vegetables than their peers
  • Physical activity associated with gardening can help lower the risk of developing dementia
( Gillian Aldrich started growing vegetables in her backyard three years ago, and she's now working on planting a bed of hydrangeas, butterfly bushes, rose campion, and -- her favorite -- pale-pink hardy geraniums along one side of her property.
As she digs in the garden, her 8-year-old daughter and 3-year-old son often play around her, sometimes taking a break to dig for worms or pick strawberries.
Instead of watching them, Aldrich is playing, too -- "my kind of play," she says.
"When you sit at a desk all day, there's something about literally putting your hands in the dirt, digging and actually creating something that's really beautiful," says Aldrich, 42, a magazine editor in Maplewood, New Jersey. "There's something about just being out there that feels kind of elemental."
Aldrich isn't the only one who feels this way. Many gardeners view their hobby as the perfect antidote to the modern world, a way of reclaiming some of the intangible things we've lost in our busy, dirt-free lives.
The sensory experience of gardening "allows people to connect to this primal state," says James Jiler, the founder and executive director of Urban GreenWorks, a Miami-based nonprofit that creates garden and park programs for low-income neighborhoods.
"A lot of people [understand] that experience. They may not be able to put it into words, but they understand what's happening."
Working in the garden has other, less spiritual rewards. In addition to being a source of fresh, healthy produce, gardening can ease stress, keep you limber, and even improve your mood.
Here are just a few of the ways gardening can benefit your physical and mental health, and how you can start harvesting those benefits for you and your family.
Stress relief
A recent study in the Netherlands suggests that gardening can fight stress even better than other relaxing leisure activities.
After completing a stressful task, two groups of people were instructed to either read indoors or garden for 30 minutes. Afterward, the group that gardened reported being in a better mood than the reading group, and they also had lower levels of the stress hormone cortisol.
"We live in a society where we're just maxing ourselves out all the time in terms of paying attention," says Andrea Faber Taylor, Ph.D., a horticulture instructor and researcher in the Landscape and Human Health Laboratory at the University of Illinois at Urbana-Champaign.
Humans have a finite capacity for the kind of directed attention required by cell phones and email and the like, Taylor says, and when that capacity gets used up we tend to become irritable, error-prone, distractible, and stressed out.
Fortunately this "attention fatigue" appears to be reversible. Following a theory first suggested by University of Michigan researchers in the 1980s, Taylor and other experts have argued that we can replenish ourselves by engaging in "involuntary attention," an effortless form of attention that we use to enjoy nature.
Trading your BlackBerry for blackberry bushes is an excellent way to fight stress and attention fatigue, Taylor says, as the rhythms of the natural environment and the repetitive, soothing nature of many gardening tasks are all sources of effortless attention.
"The breeze blows, things get dew on them, things flower; the sounds, the smells," says Taylor, herself a home gardener. "All of these draw on that form of attention."
Better mental health
The effortless attention of gardening may even help improve depression symptoms.
In a study conducted in Norway, people who had been diagnosed with depression, persistent low mood, or "bipolar II disorder" spent six hours a week growing flowers and vegetables.
After three months, half of the participants had experienced a measurable improvement in their depression symptoms. What's more, their mood continued to be better three months after the gardening program ended. The researchers suggest that the novelty of gardening may have been enough to jolt some of the participants out of their doldrums, but some experts have a much more radical explanation for how gardening might ease depression.
Christopher Lowry, Ph.D., an assistant professor of integrative physiology at the University of Colorado at Boulder, has been injecting mice with Mycobacterium vaccae, a harmless bacteria commonly found in soil, and has found that they increase the release and metabolism of serotonin in parts of the brain that control cognitive function and mood -- much like serotonin-boosting antidepressant drugs do.
Digging in the dirt isn't the same as taking Prozac, of course, but Lowry argues that because humans evolved along with M. vaccae and a host of other friendly bugs, the relative lack of these "old friends" in our current environment has thrown our immune systems out of whack.
This can lead to inflammation, which is implicated in a host of modern ills, from heart disease to diabetes to depression.
"By reintroducing these bacteria in the environment, that may help to alleviate some of these problems," Lowry says.
Gardening gets you out in the fresh air and sunshine -- and it also gets your blood moving.
"There are lots of different movements in gardening, so you get some exercise benefits out of it as well," says William Maynard, the community garden program coordinator for the City of Sacramento's Department of Parks and Recreation.
Gardening is hardly pumping iron, and unless you're hauling wheelbarrows of dirt long distances every day, it probably won't do much for your cardiovascular fitness.
But digging, planting, weeding, and other repetitive tasks that require strength or stretching are excellent forms of low-impact exercise, especially for people who find more vigorous exercise a challenge, such as those who are older, have disabilities, or suffer from chronic pain.
As a pleasurable and goal-oriented outdoor activity, gardening has another advantage over other forms of exercise: People are more likely to stick with it and do it often.
"It's not just exercise for exercise itself, which can become tedious," says Katherine Brown, the executive director of the Southside Community Land Trust, a nonprofit that supports community gardens and other urban agriculture in and around Providence, R.I. "It's exercise that has a context, that reinforces the limberness of your limbs and the use of your hands. You've got a motivation for why you want to grip. You're not just gripping a ball, you want to pull a weed."
Brain health
Some research suggests that the physical activity associated with gardening can help lower the risk of developing dementia.
Two separate studies that followed people in their 60s and 70s for up to 16 years found, respectively, that those who gardened regularly had a 36% and 47% lower risk of dementia than non-gardeners, even when a range of other health factors were taken into account.
These findings are hardly definitive, but they suggest that the combination of physical and mental activity involved in gardening may have a positive influence on the mind.
And for people who are already experiencing mental decline, even just walking in a garden may be therapeutic. Many residential homes for people with dementia now have "wander" or "memory" gardens on their grounds, so that residents with Alzheimer's disease or other cognitive problems can walk through them without getting lost.
The sights, smells, and sounds of the garden are said to promote relaxation and reduce stress.
The food you grow yourself is the freshest food you can eat. And because home gardens are filled with fruits and vegetables, it's also among the healthiest food you can eat.
Not surprisingly, several studies have shown that gardeners eat more fruits and vegetables than their peers.
"People who are growing food tend to eat healthy," says Brown. "The work that we do here with kids demonstrates it on a daily basis, throughout the seasons."
Studies of after-school gardening programs suggest that kids who garden are more likely to eat fruits and vegetables. And they're a lot more adventurous about giving new foods a try, says Anne Palmer, who studies food environments as the program director of Eating for the Future, a program based at the Johns Hopkins School of Public Health Center for a Livable Future, in Baltimore.
"I've watched a lot of cooking and gardening classes with kids," Palmer says. "It's amazing how many of them will try things like radicchio or some kind of unusual green that has a pretty strong flavor, like arugula, and they'll say, 'Wow, this is good.'"
Not to mention that homegrown produce simply tastes better.
"It's incomparably more delicious to eat something that's fresh," Brown says.
How to get started
You don't need a big backyard or a green thumb to benefit from gardening. If you have very little space or experience, you can start out with just a few houseplants, or you could even try gardening in containers.
"You can grow a wonderful crop of cherry tomatoes in nothing more than a five-gallon bucket that you've cleaned really well and put holes in the bottom of," Brown says.
For novices who want to learn the basics of gardening, a huge -- and somewhat overwhelming -- variety of information is available on the Web and in bookstores. But one of the best ways to get started is to meet some other gardeners, who can be found in local garden clubs and community gardens in just about any town or city.
For some great gardening tips, just start up a conversation with one of the gardeners next time you are passing by a community garden.
"Most will love to share their gardening savvy," Brown says. "That's a really nice way to start."
    Remember..Research is the key to your cure!"

Stressed? Maybe You Should Have Your Heart Checked

Friday - June 28, 2013 @ 12:03:47

Stressed? Maybe You Should Have Your Heart Checked
Those who thought pressure was affecting their health twice as likely to suffer heart attack, study says

People who think stress is affecting their health may be setting themselves up for a heart attack, a new study contends.
The researchers found that these people had double the risk of a heart attack compared with people who didn't think stress was harming their health.
"People's perceptions about the impact of stress on their health are likely to be correct," said study author Hermann Nabi, a senior research associate at the Centre for Research in Epidemiology and Population Health at INSERM in Villejuif, France.
"They may need to take actions when they feel that it is the case," he added.
These findings have both clinical and theoretical implications, Nabi said.
"From a clinical perspective, they suggest that complaints of adverse impact of stress on health should not be ignored in clinical settings as they may indicate increased risk of developing coronary heart disease," he said.
From a theoretical perspective, the findings imply that the perceived impact of stress on health is a valid concept that should be considered in future studies aimed at examining the association between stress and health outcomes, Nabi added.
The report was published June 27 in the online edition of the European Heart Journal.
Dr. Gregg Fonarow, a professor of cardiology at the University of California, Los Angeles, said that "stress and reactions to stressful situations have been associated with increased risk of cardiovascular disease in many studies."
However, few studies have looked at whether an individual's perception of stress is associated with cardiovascular outcomes, he said.
And it's not clear if reducing stress would affect the risk for heart attack, Fonarow said.
"Further studies are needed to determine whether stress reduction or other risk reduction strategies can reduce cardiovascular events in men and women who perceive they are under stress that is adversely impacting their health," he said.
For the study, Nabi's team collected data on more than 7,000 men and women who took part in the Whitehall II study, which has followed London-based civil servants since 1985.
Participants were asked how much they felt that stress or pressure in their lives had affected their health. Based on their answers, they were placed into one of three groups: "not at all," "slightly or moderately," or "a lot or extremely."
Participants were also asked about their levels of stress and other lifestyle factors such as smoking, drinking, diet and physical activity.
The researchers also collected medical information, such as blood pressure,diabetes status and weight, and other data, including marital status, age, sex, ethnicity and socioeconomic status.
Over 18 years of follow-up, there were 352 heart attacks or deaths from heart attack.
After taking all of these factors into account, the investigators found those who said their health was a "lot or extremely" affected by stress had more than double the risk of a heart attack compared with those who said stress had no effect on their health.
After further adjustments for biological, behavioral and other psychological risk factors -- including stress levels and measures of social support -- the risk wasn't as high. But it was still a lot higher (49 percent higher) than among those who said stress didn't affect their health, the researchers noted.
While the study found an association between perceived levels of stress and heart attack, it did not prove cause-and-effect.
Samantha Heller, a senior clinical nutritionist at NYU Langone Medical Center in New York City, offered some tips on dealing with stress.
The stress response is not only a mental reaction to a situation, but a physiological reaction, she explained.
"Acute and chronic stress over time can make us sick. Our perception of how that stress affects our health may be an additional stressor biochemically, psychologically and physiologically, creating a feedback loop that results in increased physical distress and disease," Heller said.
Managing stress does not mean ignoring it, she said. "Working with a qualifiedmental health professional who specializes in cognitive behavioral therapy can be very helpful. In lieu of that, there are some things you can do on your own."
·         Take several slow deep breaths periodically throughout the day. Deep breathing can shift the body out of the fight-or-flight response.
·         Exercise regularly. Cardiovascular exercise teaches the body how to handle the physiological effects of stress. It also helps reduce anxiety and depression.
·         Eat as healthfully as possible. Chronic or acute stress may trigger the desire to dive into high-calorie comfort foods. However, after an initial flash of relief, you will tend to feel lethargic, fatigued and possibly worse than you did before.
·         Identify stressful triggers, and create a plan to help you cope.

·         Instead of stressing about your health, be proactive and find ways to improve it. If you have high blood pressure, learn how to lower the sodium in your diet. Start walking a few days a week to strengthen your heart and help manage weight.
                                  Remember..Research is the key to your cure!" 

UPDATE: Dr. Peter Tishler and APF Drug Database

Wednesday - June 26, 2013 @ 18:22:39

Summer, 2013

Dear American Porphyria Foundation Member:

I hope you have been using the APF Drug Database (, which we established some years ago.  I am updating the drug database once again, to add new medications and reinforce or change the safety of existent medications.  Thus, I write once again to ask all APF members with an acute porphyria (intermittent acute porphyria, variegate porphyria, coproporphyria, ALA dehydratase deficiency porphyria) to provide information regarding your medications. 

Please complete the attached Evaluation of Medications form for each medication, Make a second copy if you have more medications to list.  Return it to the APF soon, using any of the mailing procedures listed below.  This will be very helpful.  I may contact you to clarify aspects of your report.

Many thanks.

Peter Tishler, MD

American Porphyria Foundation, 4900 Woodway, Suite 780, Houston Texas 77056-1837
Fax:  713-840-9552

*Instructions to complete the Evaluation of Medications Form *
  • Please fill out the form completely. *(Contact info is required for possible follow up by Dr.Tishler).
  • Mail it, fax it, or scan and Email it to the APF using the contact info listed above for the APF.

*Download Evaluation of Medications form here.*

"Remember..Research is the key to your cure!" 

Living with a Disorder

Wednesday - June 26, 2013 @ 18:08:44

Living with a Disorder

A friend asked me to help them understand my disorder and how I live with it. Please feel free to comment. I would like your input to see if this help people understand.

Imagine that you lived in a world with ONLY peanuts All their was to eat was peanuts, you worked at a factory that processed peanuts, you grow peanuts at home to save money and there is no way to avoid peanuts 100% Now imagine your allergic to peanuts. Every time you smelled peanuts you broke into hives. Every time you touched peanuts it burned your skin like pouring hot wax on it. And God for bid you ate one..(but remember peanuts are the only food source around) it would cause uncontrollable nerve vibrations, shivering, burning, itching, swelling, scaring, and pain that is so bad your brain wont let you body sleep.
Where would you find the power to wake up every morning and go to work and provide for your family?
Where does this strength come from knowing you will be in severe pain for days, weeks or months?
How do you survive without any help from friends or family?

Life with a disorder sucks!!!!! But I guess its still a life.

I hope this helps you understand.

Victor has EPP. 

 In talking with Victor I really hope that those with a Disorder reach out to their families and friends.  They may hear you express that your ill or not feeling well but ask yourself:  Do they really understand my disorder and how it affects me daily?, Can they help me? If so how?  

Sometimes some may say your crazy, stop complaining about it, get on with your life.  Some may do nothing at all.  But stop for a moment this disease/disorder you have your not the only one that suffers family, friends, associates everyone suffers.  So be proactive with your spouse, children do what you can talk about during family time, make it a point to interact with family and friends the best you can when you can.  Have a positive attitude and do your best and try.

"Remember..Research is the key to your cure!" 

"Remember..Research is the key to your cure!" 

What One Woman Can Do

Wednesday - June 26, 2013 @ 18:22:53

Jennie Eberhardt

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

What One Woman Can Do

Jennie EberhardtAPF Sponsor, Jennie Eberhardt, has been awarded the 2006 APF Ambassador for the work she has done in her community. She is a one-woman porphyria awareness dynamo. Before her illness, Jennie enjoyed a successful career as a professional make-up artist with theaters and photographers. Her work took on other unusual aspects. For instance, she created mock victims to help train ambulance crews for disaster drills. She also did the make-up for cancer patients. One of her most gratifying experiences was to create a jaw line for a woman who had lost part of her jaw to throat cancer surgery. But her most enjoyable career experience was as the make-up artist for a production with female impersonators. In fact, Jennie developed such a great relationship with her clients that they are now some of her biggest supporters and encouragers since her illness.
Jennies career also encompassed beauty pageants and image consulting; an active life to be suddenly halted when she developed severe chemical sensitivities. Then she was also diagnosed with AIP. But Jenny "made lemonade" out of her mound of lemons by changing from a career of sales and marketing to a "ministry" of promoting porphyria awareness and education. As a very active Sponsor of the IN TOUCH network, Jennie has provided a loving shoulder for many of our APF Sponsors.

"Remember..Research is the key to your cure!" 

Ho well do you rank your sleep?

Tuesday - June 25, 2013 @ 09:49:12

I believe that 7 hours of sound sleep are the perfect amount. Now for some of us 6 may be good, 8 may be better. I have listed below how I rank every hour of sleep. Read it over and tell me if you agree, disagree or have your own ideas for ranking every hour of sleep. Enjoy!

Hour 7: Perfect ammount

Hour 6: still a good amount but you wake feeling like you dont want to get out of bed.

Hour 5: You definately did not get enough sleep but give me my mocha java and i'll be fine.

Hour 4: I have to get up after 4 hours? Okay fine but I better have my own whole pot of coffee waiting for me!!!

Hour 3: Really? Are you serious? I better have a really good reason to be getting up after 3 hrs of sleep!

Hour 2: At 2 hours of sleep why does one even try to go to sleep? I mean all it is at this point is a cruel dirty trick. Good luck haveing day thats anything above mediocre!

Hour 1: You simply dont sleep. It's like when you lay down for a nap and yet cant fall asleep. Why did you even try" you ask yourself?

Now for those times when you get to sleep over 7 hours.

Hour 8: You must have been able to sleep in. You wake up feeling totally refreshed and think yes, today will be a good day.

Hour 9: This must be a Saturday morning and you have no plans to be able to sleep this long. But its a good thing! Scooby-Doo, Looney Toons, or watching that episode of "The Office" that you DVR on thursday. Your the envy of everyone who has to work that day.

Hour 10: Am I sick to stay in bed this long!

Hope you enjoyed reading this and found it amusing.
Have a wonderful week everyone!

"Remember..Research is the key to your cure!" 

APF History

Monday - June 24, 2013 @ 14:54:59

APF History

The American Porphyria Foundation was formed in 1982 when Executive Director Desiree Lyon joined with another individual whose family was affected by porphyria to form a patient-run, expert-advised organization that would educate doctors and the general public about porphyria, raise funds for research, and advocate for better policy and patient care.
At the time, Desiree was a very sick young woman undergoing treatment as an inpatient at the National Institutes of Health in Bethesda, MD.  The physician-scientists treating her had explained that Acute Intermittent Porphyria was causing the horrible pain she felt, along with seizures and other neurological disturbances, immense swelling and rigidity of her abdomen, and other alarming and life-threatening symptoms.
As so many of us do when we are first diagnosed, Desiree sought more information about her condition, written in language she or any other person without a medical degree could understand.  She got permission from her doctors to walk herself and her IV pole down to the hospitals medical library every day and began reading everything she could find on porphyria.  And from that simple beginning, this nearly-30 year old organization was born.
One of the APFs earliest efforts was joining with other rare disease advocates to form the National Organization for Rare Disorders (NORD), and testifying before Congress in the same year in support of the Orphan Drug Act (1983). Panhematin, which remains the only specific treatment for acute porphyria available in the United States, was the first drug to be approved under the ODA.
Since then, we have published materials on all the porphyrias for a patient audience; developed a comprehensive website and the educational DVD Porphyria Live; educated doctors at medical conferences, and through mailings and in-hospital seminars; helped thousands of patients in the U.S. and internationally find their way to diagnosis and treatment; served as liaison between the patient/primary care and research communities; and continually sought funds to improve research and training, diagnosis and care for the porphyrias.

"Remember..Research is the key to your cure!" 

Are You Pooping Wrong?

Tuesday - June 18, 2013 @ 21:24:33

Ok!  I know this not a subject anyone wants to talk about but it's a real thing that happens to us with Porphyria or not here are some suggestions I found that make going good.  Enjoy!

Are You Pooping Wrong?

By worldwide standards, Americans are in the toilet on elimination practices.

sitting on toilet poop
Our ancestors did it. People in Asia, Africa, and some parts of Europe still do it. So how did we Westerners end up deviating from the best way to go No. 2?
Blame it on toilets as we know them. Thrones, they have been called. Turns out we should squat, not sit.
In a 2003 study, 28 healthy people volunteered to time themselves doing their business in three alternate positions: sitting on a standard toilet, sitting on a low toilet, and squatting. They not only recorded how long it took them, but also how much effort it took. Squatting, the study concluded, takes less time and effort.
"There is definitely some physiologic sense to squatting," says gastroenterologist Anish Sheth, MD, co-author of the books What's Your Poo Telling You? and What's My Pee Telling Me? "Simply put, it straightens out the colon."
When we're standing, the colon (where waste is stored) gets pushed up against the puborecatlis muscle, which keeps fecal continence until it's time to hit the bathroom. Sitting down only partially relaxes that muscle. Squatting fully relaxes it, essentially straightening out the colon. That, in turn, eases the elimination pooping process.
Experts have argued that digestive illnesses like colitis, constipation, and hemorrhoids stem from all the sitting and straining people do on the toilet. Studies have shown, for example, that the more time you spend in the bathroom, specifically reading, the more likely you are to develop hemorrhoids, or swollen blood vessels in and around the anus. Some doctors even recommend patients try squatting to deal with their colon issues.
Squatting toilets are used throughout the world today. In Asia, public restrooms might offer two stalls with Western porcelain flush toilets, and two stalls with squat toilets in which the user plants their feet over an opening in the floor and squats. "Turkish" toilets can be found elsewhere, including Japan, Russia, and France.
While Sheth doesn't now advise his patients to try squatting, "I probably should," he says. "I guess until now there wasn't a safe way."
Sheth was referring to SquattyPotty, a product released last fall that looks like a step stool. Users place their feet on it while sitting on the toilet, enabling a 35-degree angle squat. 

What do you think? Will it catch on in the United States? Tell us in the comments!

"Remember..Research is the key to your cure!" 

Have you joined the APF In Touch Network

Tuesday - June 18, 2013 @ 21:17:37

Join APF In Touch

Because porphyria is a rare disease (defined as affecting fewer than 200,000 sufferers in the U.S.), many newly diagnosed patients have never even heard of the condition before, let alone met someone else who suffers from it. We created the APF In Touch network to meet this need.
APF membership includes access to the In Touch network, through which members can contact others around the country who are dealing with porphyria. Some members form lasting friendships via email, telephone or old-fashioned letters. Others prefer to reach out to members in their region and organize face-to-face get-togethers.
If you are seeking support and fellowship, or are willing to be there for others who are dealing with porphyria, please fill out and send in the In Touch consent form to our address below. For more information on the APF In Touch network, contact Mira at the APF office: 866-APF-3635 or 713-266-9617.
American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056
What the In Touch network has done for me:
I want to share my experience with the In Touch network provided to us by the Foundation. I was diagnosed with AIP after 18 months of symptoms. You know the severe abdominal and back pains with fatigue and nausea. You all know the drill. The scariest part was the rarity of this disease. Every doctor tells you they're not that familiar with it, and very little was actually known about it. People look blankly at you when you try to explain how you feel. I don't have to elaborate to you all that also have it. So I decided to communicate with someone else that had this illness.
This was back in 2001, the time before the wonderful website that we are so blessed with now. So I opened the newsletter and looked at the names before me. I knew that I wanted someone that also had AIP. So I closed my eyes and asked God to help me chose the right one. I opened my eyes and there she was. Lori Brown from Madison, Alabama. I am from Arkansas so she was geographically close to me. I emailed her and introduced myself to her, telling her all of my experiences so far and asked if she would like to share "war stories." She emailed back and was more than happy to do just that. So over the next 7 years Lori and I battled porphyria together.
After a while Lori and I began calling each other on the telephone. Some of our conversations lasted for two hours! We discussed how the disease affected our marriages, children and our lives in general. I don't know if it was misery loves company but I can tell you she helped me so much. To have someone who understands what you are going through is great. I didn't feel alone.
On October 16, 2008 Lori Brown from Madison, Alabama passed away. The battle with porphyria is over. She is free. I never got the privilege of seeing her face or giving her a hug. But she was one of my best friends. So if you are thinking about getting in touch with someone and just haven't done it yet I encourage you to find yourself a Lori too. Find several. I have others as well: Rose, Mira, Judy, Jennifer and Troy. Or attend a meeting scheduled near you. Or reach out and host one yourself. I can assure you it will be a fulfilling experience.
Karen Eubanks
Conway, AR

Call the APF 866-apf-3635 to join now!

"Remember..Research is the key to your cure!" 

Have you called yet?

Tuesday - June 18, 2013 @ 21:12:21

Telemedicine Consultations

If you need to consult with a Porphyria specialist and are unable to do so because of the distance to a Porphyria center, you now have the opportunity to consult electronically.
A Porphyria specialist and member of the APF Scientific Advisory Board, Dr. Karl Anderson, will be consulting with Porphyria patients via a telemedicine service from the General Clinical Research Center of the University of Texas Medical Branch at Galveston.
To access this service, you need to first locate a video teleconferencing facility in your community. These facilities are often found in libraries, businesses, universities and research centers. Unfortunately, neither the APF nor Dr. Anderson can provide you with a list of facilities with teleconferencing capabilities. Next, call Dr. Karl Anderson (409) 772-4661 to arrange for an appointment and to find out what information you might need to have ready prior to the telemedicine visit.
During the teleconference, Dr. Anderson will discuss your case with you just as he would during a regular office visit. This project was funded in part by a grant from the American Porphyria Foundation.

Physician Information Kit Available

Upon request, the APF will send a comprehensive physician education packet on the acute porphyrias to physicians. It includes educational materials on the diagnosis and management of the acute porphyrias; information on biochemical and genetic testing; Panhematin treatment for the acute porphyrias; and a recent article from the Annals of Internal Medicineon diagnosis and management of the acute porphyrias.  Please call our office at 713-266-9617 to order the kit.
In addition, the APF will also send information on PCT and EPP to physicians upon request. Please call our office at 713-266-9617 to order the packet.
These packets are delivered via USPS, for physicians only.

"Remember..Research is the key to your cure!"

Lots of Americans Want Health Care Via Smartphone

Monday - June 17, 2013 @ 14:43:00

Lots of Americans Want Health Care Via Smartphone
TUESDAY, June 18 (HealthDay News) -- Plenty of Americans are eager to use their mobile phones and tablet computers to better manage their health care, a new poll finds -- though the nation has a way to go before we're all consulting Dr. Smartphone.
In a Harris Interactive/HealthDay survey released Tuesday, more than one-third of respondents who are online said they were "very" or "extremely" interested in using smartphones or tablets to ask their doctors questions, make appointments or get medical test results.
Similar numbers of respondents were eager to use mobile phones and tablets for actual health-care services -- such as monitoring blood pressure or blood sugar, or even getting a diagnosis. Such phone and tablet apps are, however, either just getting off the ground or not yet on the market.
The survey results show that the demand for digital assists to health care is "strong and likely to grow," said Humphrey Taylor, chairman of The Harris Poll.
But he added that big questions remain: What types of services will consumers be able to get with their mobile devices, and when?
"The devil will surely be in the details," Taylor said, "and these are very big details."
An expert in health-care information agreed. "Right now, we're looking at a patchwork system," said Titus Schleyer, who heads the Center for Biomedical Informatics at the Regenstrief Institute, based at Indiana University-Purdue University in Indianapolis.
Companies are developing a number of apps that, along with equipment attached to your phone or tablet, can help diagnose everything from ear infections and eyediseases to irregular heartbeats and malaria. One goal is to bring better health care to remote parts of the world.
But there are already apps out there designed for the masses -- including ones to manage your blood pressure or blood sugar readings, for example. You take the reading via a monitor that plugs into your smartphone, and the app records all the information, which can then be e-mailed to your doctor or sent to your electronic health record, Schleyer said.
Of course, your doctor has to have the systems in place to do something with that information. And, Schleyer added, depending on where you live, and what health system you're in, that may or may not be the reality.
Schleyer said he has first-hand experience with the obstacles. His wife found an app that let her record and organize her blood pressure readings, only to discover that her smartphone "couldn't talk" to their health-care system's portal.
She ended up just bringing her smartphone to her doctor's visit.
"This poll shows us that the public is interested in using these apps," Schleyer said. "But the health-care system has to make it easier for them to do it."
 Taylor said that in some other countries, services like these are more widely used because they are required or doctors are compensated to employ them. "But in this country," he said, "most doctors and hospitals have little or no incentives to provide them. They are unlikely to offer them until it is in their interest to do so."
Another poll finding was that, not surprisingly, younger adults are more eager to use their smartphones and tablets than older adults. Only one-quarter of people aged 65 and older were very interested in using the devices to help manage their blood pressure, for instance -- compared to 38 percent of younger people.
On one hand, Schleyer noted, older adults could stand to benefit the most from such technology, because they're more likely to have chronic health conditions and need more contact with their doctors.
On the other hand, they may simply not be as comfortable with smartphones and tablets as younger generations are, he said.
Despite the interest in tapping into smartphones and tablets for health care, some poll respondents had some misgivings. They were less inclined to want e-mail or text "reminders" to exercise, quit smoking, or take medication, for example.
Schleyer said that may be because it's a bit like having your mom nag you electronically. Plus, many Americans are already inundated with e-mails and texts. "People may feel there's already too much digital information flying at them," he said.
Poll respondents were also worried about the security of their electronically transmitted medical information: 47 percent were "somewhat confident" it would be secure, while roughly 40 percent were "not very" or "not at all" confident.
That's a valid worry, Schleyer said. However, he also doubts that a hacker would have much interest in the blood pressure readings you're sending to your doctor. "They're probably more interested in your credit card number."
Schleyer thinks there's a lot of promise for technology to improve health care for Americans -- if, for instance, consumers can get not only test results sent to their phones, but also user-friendly information on what those results mean.
"But right now, none of this is mature yet," he said.
The poll results are based on an online survey of 2,050 Americans aged 18 and older, conducted between May 22-24.

 "Remember..Research is the key to your cure!"

Running over obstacles to raise Awareness for Porphyria

Friday - June 14, 2013 @ 20:02:51

Merideth Mc-Ginley Fundraiser
Merideth McGinley is a new APF member but is already a very active one.  Merideth says that the main goal of her fundraising event is to raise as much awareness for porphyria as possible.  Merideth says, "My last visit to the hospital really opened up my eyes to how little medical professionals really know about the disease.  If my fundraiser can help just one person has an easier experience with getting diagnosed then I will feel like I truly accomplished something."  She goes on to say, "When I was 19 years old, I was diagnosed with Acute Intermittent Porphyria.  Since being diagnosed in 2008, I have been in and out of the hospital and it has made me realize many people along with medical professionals do not know what Acute Intermittent Porphyria is or how to treat it". Read more of Merideths Bio

"I have decided to run in the Warrior Dash on August 3rd in order to raise money and awareness about this disease. Read more about the Warrior Dash at All donations made on my APF FirstGiving  web page will go to the American Porphyria Foundation which is dedicated to raising awareness along with improving the health and well-being of individuals and families affected by Porphyria. All donations are greatly appreciated and can be made right through the APF FirstGiving site or by sending a check or card donation to the APF by calling  866.APF.3635".

FirstGiving is a web platform that the APF has provided for Fundraisers and Awareness campaigns to make it easy for you and your contributors to use for promoting your campaign and accepting donations that go directly to the APF.
To set up an Awareness/Fundraiser page on the APF FirstGiving account go to:

"Remember..Research is the key to your cure!"

New Panhematin brochure available for your physicians.

Friday - June 14, 2013 @ 20:01:46

New Panhematin brochure available for your physicians.

The APF has produced a new Panhematin brochure.  If you would like a copy of the new brochure for your physician, please contact the APF and we will forward one to you promptly.  Remember, too, that the APF will send your doctor a free comprehensive doctor packet for the acute porphyrias. Call   1.866.APF.3635 or email .  If your physicians have questions about the administration or use of Panhematin, we will then send an instruction form or arrange a consultation with a porphyria expert if needed.
For the many patients who are taking Panhematin, please note that Recordati Rare Diseases, Inc. has purchased Panhematin from Lundbeck Pharmaceutical.  Recordati Rare Diseases, Inc. has assured us that there should be no interruption in receiving the Panhematin treatment and that the product is the same as it has always been.  In fact, for the next number of months, the telephone numbers and delivery services that were available through Lundbeck Pharmaceutical will remain the same, as well. 

FYI  For questions from healthcare professionals regarding general use and administration of Panhematin, please call Recordati Rare Diseases at 1-866-402-8520.  Your call will be answered by a member of the Lundbeck staff on behalf of Recordati Rare Diseases until late 2013.   Your physician or hospital pharmacy can order Panhematin through a wholesaler of their choice.  Healthcare professionals can call 1-888-514-5204 to receive help with regular and emergency shipments, Monday thru Friday, 9 am to 6 pm EST.  After hours and emergency orders, call 1-800-673-6723.   In an emergency event, when the hospital/physician/wholesaler does not have Panhematin in stock, Recordati Rare Disease will ship directly from its Lavernge, TN distribution site via an expedited delivery service to anywhere in the U.S.usually within 12-14 hours. 

During the 2013 International Porphyria Congress Patient Day meeting, Dr. Jean Charles Deybach spoke about the great benefit of early treatment with heme therapy ( Panhematin and Normosang)

<!--[if !supportLists]-->·        <!--[endif]-->Rapid clinical improvement.
<!--[if !supportLists]-->·        <!--[endif]-->Decreased urinary ALA/PBG 2-3 days
<!--[if !supportLists]-->·        <!--[endif]-->Mean abdominal pain duration 2-3 days
<!--[if !supportLists]-->·        <!--[endif]-->No further severe neurological complications
<!--[if !supportLists]-->·        <!--[endif]-->No major side effects in acute administration
<!--[if !supportLists]-->·        <!--[endif]-->Safe use during pregnancy (Badminton & Deybach, 2006; Marsden & Rees, 2010)

Remember Research is the key to your cure!

Kathyrn Nelson & PCT

Friday - June 14, 2013 @ 19:54:26

Kathryn Nelson

Type of Porphyria: 
Porphyria Cutanea Tarda (PCT)

My Porphyria Cutanea Tarda (PCT) experience began roughly seven years ago. At the time I was living in Irving, Texas. When lesions appeared on my face, forearms and legs, I thought that perhaps it was related to Psoriasis, an autoimmune disorder I had since I was a child. As a result, I resorted to a fairly common approach to Psoriasis which is exposure to UV rays. I spent an hour or so every afternoon in the sun, but more lesions developed and the existing ones grew in size. Repeated visits to my Dermatologist resulted in a variety of diagnoses including eczema, hives and finally a "picking" disorder which basically meant the doctor believes you are picking at your skin causing sores and infections. His primary reason for this was that the sores appeared only where I could physically reach the area, in other words, there were no lesions on my back or the backs of my legs. I pointed out that as a forty plus year old woman, I didn't think I had suddenly started to pick my skin but he was not deterred.I continued to use antibiotic ointments on the most severe patches and, as a result of other health concerns, discontinued my efforts to get a daily dose of UV rays. Over time, the lesions began to shrink but a new symptom developed. My skin darkened dramatically in areas where there were no blisters and where the blisters had healed, the skin turned white, giving the appearance of vitiligo. I was seeing a Rheumatologist for other autoimmune symptoms and he suggested I visit a dermatologist he knew who specialized in autoimmune skin disorders. He also prescribed Plaquenel to treat lupus-like symptoms tied to an undifferentiated connective tissue disorder.
It was several months later when I met with Dr. Melissa Costner in Dallas. By that time, most of the lesions and blisters were healed, however, the splotchy dark patches and scarred white areas covered most of my arms, face and large portions of my legs. I described my experiences over the previous three years. Dr. Costner listened closely and then said she wanted to do some blood work. Three weeks later, I returned to her office where she explained I had a familial type of PCT. In one minute, all of the heartaches of the previous four years made sense. She listened to me, something the previous doctors failed to do. She believed me when I said I wasn't "picking" my skin and said that rather than affecting areas where I "could reach," PCT was actually affecting areas being exposed to the sun. By reducing the time I was spending in the sun due to my energy issues, I had actually started the PCT healing process.

Today I still have very dark patches on my skin and very white scars but I have few reoccurrences of PCT. I play close attention to the medications I take, particularly since I have other auto-immune disorders which require a heavy regimen of treatment. PCT was not something I had ever heard of and was honestly not my biggest health concern at the time. But finding a doctor who listened gave me a sense of empowerment that I continue rely on today in all aspects of my health and with all my doctors.

Remember..Research is the key to your cure!

Be Prepared for Your Appointments

Wednesday - June 12, 2013 @ 10:09:35

Visiting a Doctor is a commonplace experience, but seeing a physician in a Hospital, might produce white coat syndrome, higher anxiety event, therefore, be prepared for your appointment.

Prior to the visit, think about your specific symptoms and write down all relevant information.  Concentrate on what you want to know, your concerns etc. and create a questions list.  Ask others around you for suggestions if that is helpful.

When possible type your questions and print three copies: one for you, one for the doctor and one for the person who accompanies you.  When typing your list, consider leaving room after each question to fill in the answers.  The visit can nervousness and forgetfulness so the questions list is a very helpful tool.

If at all possible don't go alone.  Provide your companion with the list and ask him/her to take notes and listen.  Four ears are always better than two in processing important information. Discussions with a doctor about possible Porphyria are tough to handle, so support is always helpful.

Being informed is essential to your care and treatment so do your homework before your visit.  This is good advice prior to any type of medical meeting to maximize your knowledge from the experience particularly when it involves a serious illness.
A super website is which deals with questions before, during and after the visit thus enabling you to create a comprehensive question list by following this user-friendly program.  Modify the questions as they apply to your situation.  This is a most valuable resource prior to your appointment.

Be prepared in order to be better informed.  This will help to ensure that you get the best possible care.

Also please take time to visit,, for all your testing & treatment options.

Remember..Research is the key to your cure!

Thinking of joining the Clinical Studies? Read more

Wednesday - June 12, 2013 @ 10:04:02

Clinical Studies

There are two main types of clinical studies: clinical trials and observational studies.  In a clinical trial, there is some form of treatment intervention. There is no intervention in an observational study, which is aimed at observing patients to better understand the long-term course of their disease.
Clinical trials are used to test new treatments before they are approved for use by the FDA. This type of trial gives patients a chance to try out a new medication in its early stages. As with any experiment, the result of a trial is not known before its conclusion. Your participation could help demonstrate a terrific treatment breakthrough, or it could help scientists discover that a new treatment does not work after all. There may be some risk involved from the treatment in a clinical trial.

Participating in either a clinical trial or an observational study is a serious responsibility. Volunteering to participate could be a way to help yourself, affected family members and other patients by advancing medical and scientific knowledge of your condition. Some patients derive great satisfaction from assisting doctors in the study of their disease. Participation in a study can also mean a chance to meet a porphyria researcher in a clinical setting, and the consultation can be beneficial.

For information on porphyria trials currently recruiting patients, call the APF office or visitNIHs clinical trials website: Clinical Trials of Medical Treatments: Why Volunteer? might also be useful reading as you think about whether youd like to participate or not.

Remember..Research is the key to your cure!

Go Green- Easing Brain Fatigue with a Walk in the Park

Wednesday - June 12, 2013 @ 09:55:06

Easing Brain Fatigue with a Walk in the Park

Scientists have known for some time that the human brains ability to stay calm and focused is limited and can be overwhelmed by the constant noise and hectic, jangling demands of city living, sometimes resulting in a condition informally known as brain fatigue.
With brain fatigue, you are easily distracted, forgetful and mentally flighty or, in other words, me.
But an innovative new study from Scotland suggests that you can ease brain fatigue simply by strolling through a leafy park.
The idea that visiting green spaces like parks or tree-filled plazas lessens stress and improves concentration is not new. Researchers have long theorized that green spaces are calming, requiring less of our so-called directed mental attention than busy, urban streets do. Instead, natural settings invoke soft fascination, a beguiling term for quiet contemplation, during which directed attention is barely called upon and the brain can reset those overstretched resources and reduce mental fatigue.
But this theory, while agreeable, has been difficult to put to the test. Previous studies have found that people who live near trees and parks have lower levels of cortisol, a stress hormone, in their saliva than those who live primarily amid concrete, and that children with attention deficits tend to concentrate and perform better on cognitive tests after walking through parks or arboretums. More directly, scientists have brought volunteers into a lab, attached electrodes to their heads and shown them photographs of natural or urban scenes, and found that the brain wave readouts show that the volunteers are more calm and meditative when they view the natural scenes.
But it had not been possible to study the brains of people while they were actually outside, moving through the city and the parks. Or it wasnt, until the recent development of a lightweight, portable version of the electroencephalogram, a technology that studies brain wave patterns.
For the new study, published this month in The British Journal of Sports Medicine, researchers at Heriot-Watt University in Edinburgh and the University of Edinburgh attached these new, portable EEGs to the scalps of 12 healthy young adults. The electrodes, hidden unobtrusively beneath an ordinary looking fabric cap, sent brain wave readings wirelessly to a laptop carried in a backpack by each volunteer.
The researchers, who had been studying the cognitive impacts of green spaces for some time, then sent each volunteer out on a short walk of about a mile and half that wound through three different sections of Edinburgh.
The first half mile or so took walkers through an older, historic shopping district, with fine, old buildings and plenty of pedestrians on the sidewalk, but only light vehicle traffic.
The walkers then moved onto a path that led through a park-like setting for another half mile.
Finally, they ended their walk strolling through a busy, commercial district, with heavy automobile traffic and concrete buildings.
The walkers had been told to move at their own speed, not to rush or dawdle. Most finished the walk in about 25 minutes.
Throughout that time, the portable EEGs on their heads continued to feed information about brain wave patterns to the laptops they carried.
Afterward, the researchers compared the read-outs, looking for wave patterns that they felt were related to measures of frustration, directed attention (which they called engagement), mental arousal and meditativeness or calm.
What they found confirmed the idea that green spaces lessen brain fatigue.
When the volunteers made their way through the urbanized, busy areas, particularly the heavily trafficked commercial district at the end of their walk, their brain wave patterns consistently showed that they were more aroused and frustrated than when they walked through the parkland, where brain-wave readings became more meditative.
While traveling through the park, the walkers were mentally quieter.
Which is not to say that they werent paying attention, said Jenny Roe, a lecturer at Heriot-Watts School of the Built Environment, who oversaw the study. Natural environments still engage the brain, she said, but the attention demanded is effortless. Its called involuntary attention in psychology. It holds our attention while at the same time allowing scope for reflection, and providing a palliative to the nonstop attentional demands of typical, city streets.
Of course, her study was small, more of a pilot study of the nifty new, portable EEG technology than a definitive examination of the cognitive effects of seeing green.
But even so, she said, the findings were consistent and strong and, from the viewpoint of those of us over-engaged in attention-hogging urban lives, valuable. The study suggests that, right about now, you should consider taking a break from work, Dr. Roe said, and going for a walk in a green space or just sitting, or even viewing green spaces from your office window. This is not unproductive lollygagging, Dr. Roe helpfully assured us. It is likely to have a restorative effect and help with attention fatigue and stress recovery.

 Remember..Research is the key to your cure!

Remember take the time: Few Wash Hands Properly, Study Finds

Sunday - June 9, 2013 @ 21:33:03

Few Wash Hands Properly, Study Finds

Did you wash your hands properly after you used the toilet? Probably not, a new study suggests.
Researchers discreetly watched 3,749 people, 60 percent of them women, after they used public toilets in a Michigan college town. Over all, 10.3 percent did not wash their hands at all, and 22.8 percent used no soap. The remainder did use soap, but only 5.3 percent washed for longer than 15 seconds, soap or no soap. According to the Centers for Disease Control and Prevention, proper washing means rubbing vigorously with soap and water for at least 20 seconds.
Men did worse than women almost 15 percent of them did not wash at all, compared with 7.1 percent of women. People were more likely to wash their hands properly if there were motion-detection faucets, a clean sink or a sign encouraging the practice.
The authors acknowledge that the presence of even discreet observers could have affected behavior, probably encouraging more hand washing. The study appeared in The Journal of Environmental Health.
Forty-eight million people a year get sick from contaminated food, said the lead author, Carl P. Borchgrevink, an associate professor at Michigan State University, and the C.D.C. says 50 percent would not have gotten sick if people had washed their hands properly. Do as your mom said: Wash your hands.

Remember..Research is the key to your cure!

Young Children with EPP ask about Camp Discovery

Sunday - June 9, 2013 @ 21:29:12

For young people with chronic skin conditions, Camp Discovery offers a summer camping experience unlike any theyve had before. Every year, the American Academy of Dermatology sponsors a week of fishing, boating, swimming, water skiing, arts and crafts, and just plain fun.
Under the expert care of dermatologists and nurses, Camp Discovery offers campers the opportunity to spend a week among other young people who have similar skin conditions. 3Many of the counselors have skin conditions as well, and can provide support and advice to campers. Fun, friendship, and independence are on the top of everyones agenda and everyone shares in the discovery of what its like to be included.

Click here for 2013 Volunteer Application

2013 Camp Schedule

Camp Little Pine
Crosslake, Minnesota
Ages 10-14
June 23-28*
Camp Reflection 
Carnation, Washington
Ages 8-16
June 24-28*

Camp Big Trout 
Crosslake, Minnesota
Ages 14-16
July 7-12*
Camp Dermadillo
Burton, Texas
Ages 9-15
August 11-16*

Camp Horizon
Millville, Pennsylvania
Ages 8-13
August 10-17
Camp Liberty
Hebron, Connecticut
Ages 8-16
August 11-17*

*staff would arrive one day early for orientation.

Remember..Research is the key to your cure!

History of Porphyria

Sunday - June 9, 2013 @ 21:22:08

History of Porphyria

A Little Bit of History
      1841 The term porphyrin comes from the Greek word, porphyus, meaning reddish-purple. It was first thought that the reddish color of blood was from iron. One early scientist performed an experiment to prove that this was not the case. He washed dried blood with concentrated sulfuric acid to free the iron. He then treated it with alcohol and the resulting iron free residue took on a reddish purple color though it contained no iron compound
     1844 - Gerardus Johannes Mulder determined the chemical composition of this purplish, iron free substance, which he named "hematin,"   He also illustrated that hematin took up oxygen.
     1867 - J.L.W. Thudichum described the beautiful spectrum and fluorescence of these red porphyrins after he published his first book on the analysis of urine.
     1871 - Felix Hoppe-Seyler crystallized hematin and described its spectrum.  He then demonstrated that the crystalline form differed from one animal species to another. Using his own newly constructed gas pump, he found that oxygen formed a loose, dissociable compound with hemoglobin, which he called "oxyhemoglobin."  He renamed the iron free hematin hematoPorphyrin.
     1874 - Dr. J.H. Schultz described a case of a 33-year-old male weaver who suffered from skin sensitivity, an enlarged spleen and reddish urine since he was an infant. He called the condition pempigus leprosus.  His was most likely the first description of protoporphyria. Dr. Schultz was later credited with giving the disease its name.
     1880- MacMunn described a patients dark reddish urine of a patient with symptoms of an attack of acute Porphyria.
     1888  Shortly after, sulphonal was introduced as a hypnotic drug, Joseph Stokvis had a patient who, after taking the drug, excreated the tell-tale dark reddish urine typical of porphyria.  The elderly woman then became paralyzed and died. Stokvis deducted that the pigment in her urine was the hematoporphyrin.
     1889 - B.J.Stokvis published the first case and clinical description of acute hepatic porphyria.
     1890 - George Harley (1829-96) studied a 27-year-old who also excreted reddish urine and an "unusual nerve disturbance after taking sulphonal. 
     1898 - T.McCall Anderson described two brothers had eruptions with burning and pruitus on the sun exposed areas of their skin so severe that they lost part of their ears and nose.  They exhibited dark urine. 
     1898 - Alfred F. Harris demonstrated that the urine of both brothers contained  the hematoporphyrin group.
     1906 - Dr. Max Dobrschansky described the first case of acute porphyria after a patient had a barbiturate.
     1911 - H. Gunther classified the diseases of porphyria, including congenital erythropoietic porphyria (CEP), which he called congenital hepatoporphyria, the rarest porphyria.
      1913 - Dr. Friedrich Meyer Betz injected himself with hematoporphyrins to determine their photodynamic impact . He subjected himself to the sun and became so photosensitized that the extremely painful photosensitive effect lasted several months. The photos of Dr. Betz taken hours after he injected himself illustrated his badly swollen face.  He was unrecognizable until the swelling decreased.  The-experiment is used today in dermatology text books.  View these photos on the APF website.
     1915 - Hans Fischer studied one of H. Gunthers patients, Mr. Petry, who had the rare type of Porphyria, CEP. Using data from Mr. Petrys case, Fischer provided significant insight into the chemistry of porphyrins. He also found that uroporphyrins and coproporphyrins were different from hematoporphyrins and subsequently suggested that the hemato prefix be dropped.
     1923 - A. E. Garrod credits H. Gunther with first recognizing that hematoporphyria was, in fact, an inherited metabolic problem in his manuscript, Inborn Errors of Metabolism. This is the first time the term "inborn errors" of metabolism had been ever used for a group of inherited metabolic disorders and the year CEP was first identified.
     1937 Dr. Jan G. Waldenstrom suggested that the name of the diseases of porphyrin metablolism be porphyrias rather than Hematoporphyrias. Using Paul Ehrlichs  aldehyde reagent, Waldenstorm identified 103 patients with acute porphyria by testing their urine and noting the red color.  He discovered that asymptomatic family members of these patients also had the same reaction if they ingested even small amounts of barbiturates and sulphonal.
     1949 -Dr. Cecil J. Watson identified cases in which there were excessive amounts of coproporphyrins in the stool and urine and suggested that this was caused by an inborn error of metabolism. He continued his research in the United States, where he and Dr. Samuel Schwartz discovered a fundamental test, , the "Watson-Schwartz tests".
     1954 - R. Schmid, Samuel Schwartz and Cecil. J. Watson classified the porphyrias according to the porphyrin content in the bone marrow and liver.
     1955 - A. Goldberg and H. Berger showed that individuals with an excess of coproporphyrin had another inherited form of porphyria that they called hereditary coproporphyria.  HCP is an autosomal dominant form of hepatic porphyria that is very similar to acute intermittent porphyria, except that some patients develop skin photosensitivity, too.
     1960's Earnest Porphyria research in Europe and  US.
     1961 - Heinrich Gustav Magnus described erythropoietic protoporphyria (EPP) as a genetic disorder arising from impaired activity of ferrochelatase, which is what adds iron to protoporphyrin to form heme.
     1970-2011 - Drs. Anderson, Desnick, Bissell, Bloomer, Bonkovsky,, Bottomley, Dailey, Galbraith, ,Kappas, Kreimer-Birnbaum, Kushner, Lamon, Levere, Levine, Mathews-Roth, McDonaugh, Nichols, Peters, Sinclair, Pimstone, Pierach, Poh-Fitzpatrick, Sassa, Shedlofsky, Schmid, Sassa, Tishler, Tschudy, Watson,,  Phillips and many others too numerous to name have furthered porphyria research and have bettered the health care of all of us with Porphyria. We owe all these people a great debt and a great measure of thanks.
     2008-2011- The APF Protect the Future program to train the next generation of experts was initiated.  We are grateful for the newest experts;  Drs. Manisha Balwani, Lawrence Lui, Gagen Sood, Manish Thapar, Bradley Freilich, Charles Lourenco, Brenden McGuire, Bruce Wang, Majid Rizk, Guiherme Perini, Jennifer Guy, Jeffery Wickliffe,, Aswani Singal, Sajid Mittal,Charles Parker.

King George III and Porphyria

Some historians have speculated that King George III of England suffered from Variegate Porphyria. According to notes made by the physicians attending him at that time, he suffered symptoms similar to those seen in an acute attack of porphyria: abdominal pain, constipation, rashes, confusion and severe weakness in his limbs. They also mentioned that he had dark reddish urine during these sieges and that he was often "mad." The royal physicians were not permitted to conduct extensive physical examinations, so they had to depend on what King George told them about his condition.
On one occasion when he was having a relapse of his mental and physical symptoms, Parliament debated his ability to maintain his position as King. Interestingly, he spontaneously recovered. Since George III ruled during the American Revolution, he was thought to have had a significant impact on Britian's loss to the revolutionaries. His mental and physical lapses were blamed for much of the mishandling of the war. In 1811, George suffered a severe relapse and subsequently was dethroned by the Prince of Wales.
After researching the physicians' reports, Drs. Ida Macalpine and Richard Hunter proposed that King George might have had one of the acute porphyrias. They published their theory in the British Medical Journal in 1966 and later wrote a book, George III and the Mad Business, which presented more detailed accounts of King George's malady. It is important to note that a number of Porphyria specialists and other physicians disagree with their theory. However, over the years it has been widely publicized.

Porphyria in Turkey

In southeastern Turkey, between 1956 and 1961, there were reports of an epidemic of PCT. Apparently, in 1954 the Turkish government distributed a supply of wheat seed that had been treated with fungicides containing 10% hexachlorobenzene (HCB). The wheat was originally intended for planting, but the shipment arrived too late in the season. Because there was a limited food supply in the Turkish provinces of Dijarbakir, Mardin, and Urfa, the seed was diverted for food production. It was difficult to quantify the extent and duration of HCB exposure from existing surveys, because the HCB-treated seed appeared no different from untreated supplies.
As many as 5000 individuals were reported to have been affected by the HCB treated seeds. They exhibited PCT-like syndromes as early as 1956. The government discontinued using the HCB-containing fungicide in 1959, but it was not until around 1961 that the PCT outbreak waned. Researchers from clinics near the area began to trace the dietary histories of the affected individuals and discovered that HCB appeared to be the cause of the acquired form of PCT.
Prior to this time, acquired Porphyria associated with exposure to environmental toxins was observed in experimental animal models but only rarely in humans. Shortly after the reports from Turkey were published, the association between the chronic administration of HCB to induce excessive porphyrin accumulation was confirmed in animal models as well.
Although quantitative reports of HCB exposure from Turkey are incomplete, some accounts estimate that the amount of HCB ingested by the affected individuals ranged from 0.05 to 0.2 g/d over an unknown, but "relatively long period," before changes in their skin became evident. Long-term follow-up studies by Drs. Cripp and Peters and their colleagues at the University of Wisconsin indicated that the average lag time between HCB ingestion and clinical manifestation of disease was about six months. Furthermore, their study indicated that the levels of excreted porphyrins did not correlate with the individual's age at exposure, sex, serum HCB levels, or severity of initial symptoms.

Remember..Research is the key to your cure!

How to Make Your Hospital Stay More Comfortable

Friday - June 7, 2013 @ 10:36:03

No one looks forward to a hospital stay but it doesn't have to be miserable and awful. There are some things you can do to make yourself feel more at home.

If this is a planned hospital admission get your bag packed and ready beforehand. If this is an emergency admission then have a family member bring you essential items as soon as possible.
Don't forget to bring in your medication bottles, prescription and over the counter both. Most hospital require this to get an accurate medication listing of what you are currently taking. Do not send your medication bottles home until your admission interview is completed after being assigned a room on a unit as it is needed not just for planned admissions, but emergency admissions as well. Yes, they will get a listing in the Emergency room, but the unit you are admitted to also has to see these medications, and if you have already sent them home or to the car, someone will have to bring them back in for you. If you do not have anyone with you to take these medications home, they can be locked up in a secured cabinet on the unit for you until discharge home or a family member comes in
Bring your own pillow. There is no place like home and no bed like your own but bringing your own pillow to the hospital will help you get a better night's sleep. If you have any soft comfy throw or blanket this is a plus too. Hospital linens can be stiff, rough and uncomfortable.
Bring a sweat proof thermos or large drinking glass with a lid. Nurses and staff can be very busy with the patient load they are taking care of so they may not always get that cup of ice or pitcher of water for you in a timely manner. Be prepared with your own large drinking thermos/mug. Also if you have anything in particular you like to drink such as soda, stash some of those in your room, but only if you are allowed to drink them.
Bring books, computer, cell phone etc. so you can better keep in touch with your friends and loved ones. Nothing worse than being stuck in a hospital room with no contact with your friends and family. After all you can only watch so much TV without being bored to death. Don't forget your charger or AC adapters. *Remember to make sure these items are listed as being with you in the interview chart, especially cell phones and computer notebooks.* Sometimes things have a way of walking off or disappearing before you are discharged home.
6.6 don't stock pile your room with tons of food. Nurses hate it when it looks like you have stockpiled your room with enough food and snacks to stay for 6 months. Have on hand some crackers or fruit, a few things to tide you over in case you get hungry in the evening or in between meals, but adhere to the diet your doctor has prescribed for you. It's a big no no to be sneaking in all kinds of junk food when you are on a diabetic or cardiac diet.
Bring music. If you are a music person, nothing is more soothing and relaxing than to put your headphones in and close your eyes and relax. If you have an mp3 player or small radio bring it loaded with your favorite music, but again make sure it is noted on the chart that you have this equipment with you.
Bring toiletries: body wash, tooth paste, comb, brush, shampoo, powder. Sure the hospital has soap, toothpaste, comb and toothbrush but these are such cheapo poor quality products. You will feel so much better using your own freshly smelling great products. Nothing makes you feel better when you are sick than getting a good shower/cleaning and smelling fresh.
Pack a robe. No one wants their rear end shining when you go for a walk down the hall and sometimes you can't always wear your own comfy pajamas, especially if you have tubes, lines, and heart monitor on. Bring slippers or easy to slip on shoes. Some hospitals have non slip socks but these are one size fits hardly any one. It would be best not to walk on the hospital floors barefoot, as they can be quite germy.
10.                             10
Have a pad or notebook so you can write down any questions you have for doctors. They usually come flying in, speak fast and exit fast so be ready with any questions you may have, they don't like to linger around waiting for you to think of something you need to ask. There are the few that have that great bedside manner that make you feel like you are their only patient, but these are few and far between.
11.                             11
Use your call bell wisely. When your nurse comes in, ask her for anything you might need/want. It is not time wise for them when they go to a patient's room and spend 15 or 20 minutes in there and ask if there is anything else they need, then walk out of the room and 2 minutes later the same patient is calling out for something. Remember shift change. At most hospitals, shift change occurs around 630 to 730 am and pm. When you call out during this time it is not likely your needs are going to be met quickly because they are trying to give/get report on patients. Seems like everyone has to go to the bathroom or need pain medicine at this time, so try to do these things before or after this time, especially when usually things people call out for during this time are not an emergency or urgent matters.
12.                             12
Appreciate your caregivers. Nothing makes their work so enjoyable as a simple "thank you" from their patients/family members. Everyone likes to know that they are appreciated and not many people understand how much nurses give, emotionally and physically, every day to their patients. Make a note of the names of staff that seem to go out of their way to make you feel important, and well cared for, and comment this on the surveys sent to you in the mail seeking your comments about your stay at their facility
13.                             13
Hospital staff is required to check on patient's wellbeing every 1-2hrs daily & nightly while you are in the hospital. If you do not want to be disturbed when you are trying to rest or sleep, please make mention of this to the nursing staff caring for you during you stay.

Remember..Research is the key to your cure!

The Porphyria Consortium, APF, Protect the Future Conference

Wednesday - June 5, 2013 @ 20:11:29

The Porphyria Consortium, APF, and the Protect the Future doctors gathered in Lucerne Switzerland to attend the 2013 International Porphyria and Porphyrins Conference.  The photo below is of many of the esteemed group of scientists/researchers and clinicians.

Left to Right:   Howe, Makuda, Yaziki, Naik, Thapar, Marcero, Lyon, Ludke, Balwani, Latimer, Gou, Caballes, Bloomer, Singal, Bonkovsky, Perini, Bloomer, Mittal, Anderson

The next meeting in 2015 will be in Dusseldorf, Germany.  Hopefully, more of you will be able to attend the outstan