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daisy249 (@daisy249)

Who do I see for porphyria?

Blood Cancers & Disorders | Last Active: Dec 2, 2022 | Replies (20)

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@colleenyoung

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).

I also noticed that you wanted to post a link with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

– Erythropoietic Protoporphyria (EPP) and X-Linked Protoporphyria (XLP) https://porphyriafoundation.org/for-patients/types-of-porphyria/epp-xlp/

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Replies to "Thanks, @clive1395, for finding out more about your brother's type of porphyria and treatment, namely he..."

Great thx!
Best regards
Clive

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.