Karen
I am hoping someone can help me. My husband is 41 and has had this disease most of his life. The problem is he was told that the only medication that could help him is "hematin" but it is not available in the United States. Is this true? I also read a message from "Leanne" regarding activated charcoal capsules, but I don't know how she makes them. Does anyone know of any doctors who specialize in AIP Porphyria, preferably in the New Jersey area. He has such violent attacks and we are at our wits end. All his doctor gives him is morphine pills to help ease the pain during the attacks. Please, if you have any information we will be extreamly grateful. Thank you