Erythropoietic Protoporphyria

Feed

Contributors

Partners

Join the Conversation on
Erythropoietic Protoporphyria

87 people

0 stories

2 posts

About Erythropoietic Protoporphyria

Explore Our Newsletters

What's New in Erythropoietic Protoporphyria

All

Stories

Posts

Videos

Story

man wearing wetsuit standing on beach with his adult children

man wearing wetsuit standing on beach with his adult children

American Porphyria Foundation

•

Erythropoietic Protoporphyria

6y

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 [...]