Welcome to my blog, where I write about being alive while experiencing a rare genetic disorder known as Erythropoietic Protoporphyria, or EPP for short.
People who are diagnosed with EPP experience severe pain after they are exposed to direct sunlight. Unlike sunburns, symptoms are often not visible. Because the world operates on a daytime schedule, it is common for EPP patients to protect themselves with heavy clothing, masks, gloves, and hats even on a hot day. People with EPP live as best as they can while still finding innovative ways to provide for themselves and their families.
Roughly 1 in 200,000 people suffer from Erythropoietic Protoporphyria. As EPP is difficult for medical professionals to recognize and diagnose, many EPP patients can live their whole lives never knowing why they are “allergic to sunlight”.
I hope that my blog can raise awareness about EPP by dispelling the darkness of ignorance with the light of understanding.