A Erythropoietic Protoporphyria anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Erythropoietic Protoporphyria. You're not alone.
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Members Sharing the Experience "I Have Erythropoietic Protoporphyria"
8 Members
Related Groups to "I Have Erythropoietic Protoporphyria"
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This Experience at a Glance
Story highlights
These snippets show some of the most common themes mentioned in this experience's stories:
These snippets show some of the most common themes mentioned in this experience's stories:
- "My time limit for the sun is about 1 - 2 ours then 4 hours inside, i never follow that im still young i dont think my friend understand wheni have to leave the beach or go home when they start taning its so hard to tell them what im going though, but im still very lucky i say, i may have EPP but the fact that i have no burn marks on me is..."
- "So my journey continues..."
- "I haven't been able to get an official diagnosis yet, but I believe that EPP is the cause of my sun sensitivity..."
And the Story Awards Go to...
Most Popular: I Have Just Been Diagnosed With Epp
Most Recent: Erythropoietic Protoporphyria
Statistics:
67% of people who have this experience are in their twenties, 33% are in their teens, and 11% are in their sixties. 50% of people who have this experience are men.
You may cite any I Have Erythropoietic Protoporphyria statistics, provided you link back to this page
Check out this group's What Is It Like To Have Erythropoietic Protoporphyria guide, where people with this experience share their tips and hints.
Related Topics
Members said this page is also related to:
Do You Have Erythropoietic Protoporphyria? , What is it like to Have Erythropoietic Protoporphyria? ,Have Erythropoietic Protoporphyria personal stories, Have Erythropoietic Protoporphyria personal experiences
Other experience groups that have been combined into this group include: None yet.
Other experience groups that have been combined into this group include: None yet.
This is an experience group where everyone says: I Have Erythropoietic Protoporphyria. It features support, personal stories and experiences, advice, chat, talk, forums, videos, pictures and resources from real people, just like you.
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