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Porphyria

Eileen

Message 2 of 2 Previous



Leanne, My son-in-law is 41 and has been suffering from acute intermittent porphyria for most of his life. He was told that "hematin" is possibly the only medication that could help him, but that it was not available in the United States. He is now on the verge of possibly losing his job because his attacts are becoming more frequent and severe. I have never heard of the oral activated charcoal idea. What kind of porphyria do you have? Also, do you know of any doctors who specialize in porphyria? We live in New Jersey. Any help would be greatly appreciated. Thank you very much. I am looking forward to hearing from you.
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