I am a mid-30's female who was finally diagnosed at age 16 with EPP. As a child, my parents tirelessly sought diagnosis of the disease and only by chance, after I had a severe reaction, was I properly diagnosed by a Dermatologist at Kaiser Permanente. Dr. Rebecca Engassser just happened to be familiar with the disease, and helped me adapt my lifestyle to accommodate the photosensitivity. Now, finding valuable resources like American Porphyria Foundation, my outlook is improving. Knowing that I can reach out to others who can understand what it is like to live with this disease is incredibly reassuring. I look foward to communicating with others, to share experiences, coping strategies, success stories and giving each other support! Thank you!
Type of Porphyria:
Erythropoietic Protoporphyria (EPP)