Acute Intermittent Porphyria (AIP)
My story begins when I was in grade school. Our family went to a large flea market and began walking in the sun. I started getting very sick, shaky, and in pain I told my mom I needed something to drink or eat. She kept telling me to wait we would get something soon. I kept insisting, so she gave me some money to go to the concession stand.
When I got to the stand, I began shaking badly. The next thing I knew there were people standing around me, because I had passed out. My mother told me I must have hyperglycemia. From then on when I would have attacks, I just assumed it was hyperglyemia. Then years later when I was older, I consulted with a doctor. He put me on medicine: naprosyn and Zantac for the pain and stomach problems. I visited him a lot. He told me even though the test did not show it, he believed I had Rheumatoid Arthritis.
I lived in pain, nausea, tiredness, heart pulpatations. I had been hospitalized several times for heart pain. Any test I would have always came back negitive. I was so frustrated.
At that time, we lived in Woodbridge VA. We then moved to Miami, FL. I was reluctant to leave my doctor in VA, because he was always there for me. Even thought he did not diagnose me with Porphyria, he was very caring. Shortly after my family and I moved to Miami, I began having worse pain than ever. It began to weaken my lower extremity so much that my husband had to help me out of bed in the mornings and get me dressed. By the end of that week, I became paralyzed from the waist down. I could not move. The pain was severe. My husband called my father.
They got me a wheel chair and rushed me to the closest emergency room. The doctors took all kinds of test and again found nothing. I could not believe it. We did not have insurance, so we went home. For about a week I continued to still not be able to move. Then gradually I began to walk with a cane. After a couple of months, I was walking and moving okay, never knowing what had happen. We then moved to Tallahassee, FL When we got good jobs with insurance, I began going to the doctor to get answers.
The doctors could not explain my pain. Test after test they would tell me that nothing was wrong with me, the test are all fine. I would explain that I know there is something wrong with me. Then because of my persistance, the doctor ran other test. I had a test that showed that I might have lupus. My doctor then sent me to a Rheumatology doctor. After seeing me, he said he also believed that I had lupus and that I would only get worse.
Instead of getting better after five years of only getting worse, I ended up in a wheel chair completely unable to care for myself and told my husband I did not feel like I was going to live much longer . The thing that troubled me and helped me not give up was that every time the doctors would tell me that the test for my lupus were always normal. I would think how can that be when I am dying and in a wheel chair unable to care for myself. I began praying harder than I ever have before. Lord please help me find a doctor that will know what is wrong with me so I can live and not die.
After praying I searched through the providers that were available throuth our insurance company. My first visit the doctor knew how desperate for answers I was. She sent me to the Mayo Clinic in Jacksonville to see if I had lupus or not. They said I did not have lupus, and they did not know why I had been diagnosed with lupus. So here I was again not knowing what was wrong with me. When I returned to my new doctor she said she had a patient before with the same symtoms as mine, and she had a rare disease called porphyria. She wrote the name down and asked me to research it at home while I took the twenty four hour urine test and waited for the results.
When I began reading about it was like reading about myself. I knew when the results came back they would be positive and they were. She then sent me back to Mayo Clinic in Jacksonville, but in the mean time, she had taken me off all medications and ncreased my carbohydrates. I began to slowly get better. I was begining to feel life in me again. By the time I got to go to Mayo, I was walking with a cane.
When I got back to Tallahasee a week later, I had a bad attack. My doctor put me in the hospital to get glucose by IV. I was in the hospital for two days and felt the best I had felt in a long time. The doctor let me go, but within hours of being let go, I went into another attack. This time my doctor said he found that Panhematin had just been approved by the FDA. He ordered it, and I stayed in the hospital for four days. When I got out, I no longer used a wheel chair, walker or cane. Praise God!
It took frequent visits about every three months for treatments with the Panhematin. Whenever I had to go to the hospital, I would have to explain to each doctor and nurse what to do for me, until one day I asked my doctor if there was a specialist that could take care of me. She gave me to a Hematology doctor. My next attack was handled by him. He also put in a port, so I do not have to have my arms poked any more. Praise God! I am now living a normal life. I can do most anything with limitations, and my attacks are farther apart each time. I only visit the hospital now about once or twice a year.
I am so very thankful for the helpful information on the American Porphyria Foundation web site. It helped me so much during my rough months. I have learned a lot. I owe my health to the Lord, He is the one that healed me by leading me to the proper doctor and helping me to educate myself in knowing what to do to get better. We can live all live a more normal life if we just take precautions such as wearing protective clothing and sunscreen for the photosensitive porphyrias, eating proper amounts of carbohydrates, keeping stress levels down and working closely with our doctors.
Editors note: Please remember that AIP is not photosensitive.