Erythropoietic Protoporphyria

The story of Nanelle

Living with this rare disease makes life outdoors very painful. It is like being allergic to the sunlight, which causes wounds and severe pain upon exposure, forcing me to stay indoors when sunny. A reaction can last for a day or two or a week or more, with pain so severe, sleep is impossible.

Connect with other people living with Porphyria –