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Patient Day Feature: EPP & XLP Guidelines with Dr. Amy Dickey

  • EPP/XLP, Recordings

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.
This presentation was originally delivered at Porphyria Patient Day on October 29, 2023 in Bethesda, MD.

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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).

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"My connection to porphyria is a bit more personal than a lot of other researchers.  I have EPP porphyria."

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Question: Are there guidelines for managing erythropoietic protoporphyria (EPP) and x-linked porphyria (XLP)?

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Question: I’ve heard that vitamin d deficiency can cause osteoporosis, and that sunlight is the main way you get vitamin D. If you have to stay out of the sun to avoid a reaction, what are things you can do to keep your bones strong?

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Question: A lot of EPP patients are confused about taking iron supplements. What would you suggest?