← Return to Who do I see for porphyria?

Discussion

Who do I see for porphyria?

Blood Cancers & Disorders | Last Active: Dec 2, 2022 | Replies (26)
Comment receiving replies
@timoteo

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.

Jump to this post

Replies to "Hi, thanks for running this. I just found it. My brother had it for years, the..."
Colleen Young, Connect Director | @colleenyoung | Sep 24, 2022

Have you considered requesting a consult at Mayo Clinic?

VIEW AND REPLY
daisy249 | @daisy249 | Dec 2, 2022

If you have symptoms, connect with the American Porphyria Foundation. They can send you info and a free genetic testing form, but it does need to be filled out by a physician. Since it’s free, I don’t see why any dr should deny submitting it. They have a fb group as well.

VIEW AND REPLY