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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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This study involved focus groups with porphyria patients to explore the emotional and psychological challenges they face. Participants discussed their lived experiences, shared coping strategies, and offered recommendations for additional support to improve their quality of life.
Question: How will menopause affect my porphyria? Are estrogen treatments for menopause safe?
Having a standardized questionnaire tool is important for evaluating the effectiveness and impact of new treatments for EPP. Regulators like the FDA will consider improvements in quality of life, along with other factors, when deciding whether to approve new treatments. This research developed a questionnaire to evaluate the impact of EPP on health-related quality of life (HRQL) called the EPP Impact Questionnaire or EPIQ.
"I realized that my condition with the sun was either going to define my life or become a cool addition to the story of my life."
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.
This article provides guidelines for the diagnosis, treatment and management of erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP).
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.
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?
Liver dysfunction is a rare but very real possibility for people with EPP and XLP. These guidelines provide recommendations for the diagnosis, monitoring and treatment of liver-related dysfunction in protoporphyrias (EPP and XLP).
This research describes some important features of EPP including prodromal (warning) symptoms, a priming effect from previous light exposure, and lack of visible symptoms among many patients.
