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Thanks, @clive1395, for finding out more about your brother's type of porphyria and treatment, namely he was part of the trial for Scenesse (afamelanotide) for treatment of Erythropoietic Protoporphyria (EPP).
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- Erythropoietic Protoporphyria (EPP) and X-Linked Protoporphyria (XLP) https://porphyriafoundation.org/for-patients/types-of-porphyria/epp-xlp/
Replies to "Thanks, @clive1395, for finding out more about your brother's type of porphyria and treatment, namely he..."
Hi, thanks for running this. I just found it. My brother had it for years, the acute kind. He would go to the ER with no luck. 30 years ago folks did not see it so much. His name was Perer R. Fisher and he ended up going to the Mayo clinic in the 80's where they finally found the reason. It was bad. Anyway, is the genetic test best?? I no longer go to the Doc but I need to get a grip on this at 64.
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Great thx!
Best regards
Clive