Does anyone out there know about the disease Porphyria?
I know quite a bit because I have it, but my doctors (even the one who finally diagnosed it) don’t listen to me when I talk about symptoms such as severe abdominal pain, muscle pain and weakness, and severe numbness in my feet and ankles. I have read about a drug called “heme”. Can anyone tell me what they know or have experienced? I am getting sicker and desperate. Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other. A common feature in all porphyrias is the accumulation in the body of “porphyrins” or “porphyrin precursors.” Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends upon the type of porphyria. The clinical manifestations of the different types of porphyria are not the same. Forms of treatment also depend on the type of porphyria. Therefore, it is difficult to make general statements that apply to all these disorders. The symptoms arise mo
