Janie Williams

Type of Porphyria

Hereditary Coproporphyria (HCP)

I always felt my personal story was so private that it was “my secret.”  However, it is now time to tell it in hopes it will help others.  I was raised to have a passion for life and that anything you

can dream you can achieve, and also, if you weren’t well enough to go to school, you had to stay home in bed. 

As a young child, I always had abdominal pain and stomach aches.  We just referred to it as ‘an Arrington stomach’ (named after my maiden name because my Dad and his bothers had stomach problems all their lives).   No matter how many times I would tell doctors, they would say it was nothing and it would not shorten my life.  It finally got to the point where sometimes the abdominal pain was so fierce I wondered if I should actually pray for death.  I would go to the hospital, only to be sent home saying I just had a low-grade infection and to go to my doctor the next day.  And, of course, the next day the doctor would tell me the same thing. 

In my 20’s, being single and along with not knowing I had Porphyria, I thoroughly enjoyed the beach sun and, of course, engaged in social drinking which are big ‘no-no’s’ for one with this disease. 

At age 29, after enjoying the summer sun, my urine was the color of ‘dark, brick red.’ I had blisters on my face, the back of my hands, arms and on the end of my toes.  The pain was so fierce I could not even wear shoes.  On a hot day, I would feel like my skin was on fire and itched so much that if I could unzip my skin and run away I would.  By now, I had been to 11 doctors and decided to try a dermatologist.  He took one look at me and said I had a rare genetic liver disease called Porphyria and promptly sent me to the University of Southern California which at that time studied Porphyria at their center for Rare Diseases.  To treat this condition, I had one pint of blood removed every other week for the next four years.  I obviously learned how to avoid these attacks by eliminating alcohol and using very smart judgment about the sun which include wearing sun protective clothing and playing golf very early in the morning.  I also learned which food to avoid to help not have stomach problems.

As the saying goes, a little knowledge can be dangerous.  In 1994, at age 52, I had severe abdominal pain and went to the hospital.  At that time about 25% of Porphyria people who went to the hospital died because they were given wrong medications.  So, of course I told them I had Porphyria, however, I knew this was different and that I was not having an attack.  They said I just had a low-grade infection and sent me home.  The second hospital also tried to send me home and fortunately I refused to leave!  The bottom line here is, I ended up with a 4-day old, ruptured appendix with gangrene, peritonitis, and abscesses.  Plus, after seven weeks, I ended back in the hospital for 10 days with bleeding adhesions.  When people ask me how long it took me to recover, I say “physically and emotionally, 10 years!”

I became a Doctor of Nutrition to save my own life, however, it is through the American Porphyria Foundation that I have received the most education to understand this disease.  For a person with this disease, the quality of one’s life is being able understand what is going on and to be able to avoid attacks.  Right now, I am living my American Dream of feeling as GREAT as possible everyday and enjoying life to the fullest.  This is definitely a full-time job making sure I do everything possible 24 hours a day to avoid Porphyria attacks.

Living with this disease can be very degrading.  For me, I have chosen to receive all the education and knowledge I can to live as normal a life as possible because I deserve it, and so does my husband, family and friends.