“Thankfully, after many difficult years of living with the disease, finally my Porphyria was correctly diagnosed. All things considered, I am now able to live much more of a normal life. However, I would still love my life to be more active, and without pain, diet and the persistent fear that the wrong medicine or food could trigger serious, potentially life-threatening spontaneous attacks.”

I frequently had terrible abdominal pain, back pain and vomiting. My blood pressure rose dangerously high, and I suffered multiple seizures, spending days in intensive care whilst tests were done to investigate my problem. When AIP finally got diagnosed, I remember when I awoke from my coma to find my hospital room was filled with candies, cakes, and every kind of delicious carbohydrate imaginable. A high carbohydrate diet is the standard recommended for AIP patients. It was, perhaps, appropriate given the time required to make the diagnosis of such a rare condition.

During the next stage I had to deal with 20 hospitalizations in a two-year period, experiencing the same nightmare over and over again: I was admitted through the Emergency Department, received delayed or simply the wrong treatment, which made my condition worse. They couldn’t stop the acute attacks, they could only wait until they subsided and then stabilize the problems caused. Treatment was basically intervention glucose therapy. Eventually I received hemin early in an attack and this stopped the attack before it progressed and did serious damage.

I still have ongoing issues with all sorts of pain, which I manage with a better diet and the removal of all things that could precipitate another attack."