Member Stories

Member stories are posted on our website to help readers connect a name and a life story with the disease. The stories here are personal — they are an attempt to describe what life is like with this 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 help connect newly diagnoses patients, contribute to general awareness of porphyria, and help more people to be diagnosed promptly and accurately. We thank our members for sharing some of the most intimate details of their lives to support others.

Please browse this library of stories that are associated with the specific type of porphyria.
*Click on each type of Porphyria to read Member Stories!

Your story is very important too. Please write your experience and send your photo to be included in the Member Stories section. Email your story to