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

MI HERMANO TIENE UN ACRISIS DE PORFIRIA AGUDA

by ceciliaochoa published 5 days ago
2 comments

Alguien puede decirme como es la recuperacion de la movilidad despues de una crisis

My life with an undiagnosed erythropoietic protoporphyria

by Flavie published about 1 month ago
3 comments

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

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

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