Erythropoietic Protoporphyria

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man wearing wetsuit standing on beach with his adult children

man wearing wetsuit standing on beach with his adult children

American Porphyria Foundation

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Erythropoietic Protoporphyria

7y

Why This Wetsuit Lets Me Participate in Life Despite My Rare Disease

By Shawn Willis I have erythropoietic protoporphyria (EPP). I am 44 years old. I was diagnosed with EPP when I was 8. Prior to my diagnosis, I remember dealing with several issues. I remember the pain and the long nights with my mom at my bedside doing everything in her power to make me feel [...]