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Jennifer Fimiani

Five years ago, while planning my wedding, I started dieting. I actually looked and felt better then I had in many years. Six months before the wedding, I saw the dark red urine about which my mother had always warned me. I knew her stories well. She has had AIP since 1966, but that was her not me. I had really never been sick before. That was my first time being diagnosed and treated with AIP.

Two years later, I was pregnant with my son Luca. It was Christmas time and I was in my second trimester. Although I felt more tired then usual, I thought that's what happened when you are pregnant until the Tuesday before Christmas 2003 when I wasn't able to move in the bed. I just vomited and became more and more confused. I couldn't walk, and my whole body hurt. One week later I woke up in the ICU. I received fluids and other teatments throughout the rest of my pregnancy and delivered a healthy baby boy five weeks early on April 14, 2004.

The delivery was a sucess although I had a bad reaction from the medication needed to stop my bleeding. My health was good until January of this year, 2005, when I had an allergic reaction at work. My tongue swelled up and off I went into porphyria attack for resons we couldn’t determine.

I am receiving Panhematin treatments to try to prevent attacks,  and I have found a wonderful doctor who understands my situation. That is the best news for my future health. An understanding competent doctor is half of the battle.

Also, I am now a research patient for the enzyme replacement research.  I hope my participation in this research project will help my children and other people in the future.

Jennifer Fimiani
York, PA