Contact UPA at 800-868-1292 or info@porphyria.org
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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Question: I think I might have Acute Intermittent Porphyria (AIP). My doctor ordered a urine porphyrin test, my porphyrins were high but then I was told that the results aren't considered diagnostic. Why not? And what tests should my doctor order?
Question: How will menopause affect my porphyria? Are estrogen treatments for menopause safe?
Dr. Bruce Wang answers the questions about acute hepatic porphyrias that we didn't get to in the Facebook Live Q&A on February 24, 2024.
Dr. Bruce Wang answers the questions about acute hepatic porphyrias that we didn't get to in the Facebook Live Q&A on February 24, 2024.
Question: I am having a planned laparoscopic surgery next week. Should there be a filter on the light on the laparoscope? If so, would you be able to tell me what filter would need to be used? Can you also tell me what filters would be needed for the surgery lights in the operating room?
Question: If you have acute porphyria, why is it important to have your liver function checked annually? What can you do to prevent issues with your liver?
Question: I have AIP. I haven’t had a porphyria attack for several years and I don’t have a porphyria specialist. Is there anything I should ask my doctor to check for during my annual check-up?
In a special livestream for Global Porphyria Day 2023. UPA's own Kristen Wheeden and Porphyria Expert Dr. Bruce Wang answered your questions! Recording now available.
Check out this recording of UPA's Kristen Wheeden and Porphyria Expert Dr. Bruce Wang as they answered your porphyria questions live.
Question: Are there guidelines for managing erythropoietic protoporphyria (EPP) and x-linked porphyria (XLP)?
