Welcome - Porphyria Community

What is Porphyria ?

The porphyrias are a group of eight, relatively rare, genetic disorders. In each porphyria a specific enzyme, which is needed to complete each step on the pathway to produce haem, is faulty. With all porphyrias this results in a build-up of porphyrins. They have two possible effects: acute attacks or skin sensitivity in sunlight.

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More members stories

Latest Member Stories

My life with an undiagnosed erythropoietic protoporphyria

by Flavie published 6 months ago

I have an happy life and my EPP is a very light one compared to others.

I am sensitive to sunlight, I learned to avoid sun inside the car, chang...

Living with Gunther Congenital Erythropoietic Porphyria

by fidemiron published 7 months ago

I was born on a cold day in January in Alicante. An excited and modest family was expecting the birth of a new member. Yes, I was about to be born....

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