The United Porphyrias Association is proud to work closely with the porphyria experts on the UPA's Scientific Advisory Board and at the Porphyrias Consortium.
We're pleased to introduce our Experts in Action where we'll feature:
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What should a person with Acute Hepatic Porphyria know about homosysteine and is there guidance for patients to follow?
Question: A lot of EPP patients are confused about taking iron supplements. What would you suggest?
United Porphyrias has received many questions about pain, most related to pain in the Acute Hepatic Porphyrias (AIP, VP, HCP, ADP). This week, we are addressing Pain in Acute Hepatic Porphyria in depth.
Question: My daughter (now age 26) has AIP. How will acute porphyria attacks impact her liver as she ages? She was diagnosed a few years ago and her last attack was several months ago.
Question: We know that extra porphyrins are what makes the skin hurt when my son has an EPP reaction but are they doing any damage on the inside of the body?
Question: I was diagnosed with acute intermittent porphyria about two years ago. I’m always worried about my next attack. What plan should I have in place in the event of another attack? At what point do you think I shouldn’t try to go it alone without help?
The diagnosis and treatment of rare conditions like EPP and XLP can be confusing for doctors and patients alike. Join Dr. Amy Dickey as she walks us through the recommendations from the new consensus guidelines for diagnosing and managing protoporphyrias.