Member Stories

Because Porphyria is so rare, many newly diagnosed patients have never even heard of the condition before, let alone met someone else who suffers from it. The same is true for members of the general public, and this lack of understanding in others can make life much more difficult for people living with porphyria.

We post these stories on our website to help readers connect a name and a life story with the disease. The stories here are personal — they are attempt to describe what life is like with a rare and complicated disease.
To learn more about the typical symptoms and course of the disease, please see the About Porphyria section of our website.

We hope that these stories will also contribute to general awareness of porphyria, and that this will help more people to be diagnosed promptly and accurately. We thank our members for sharing some of the most intimate details of their lives with others.

Congenital Erythropoietic Porphyria (CEP)

X-Linked Protoporphyria (XLP)