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Part Four – The impact of Erythropoietic Protoporphyria (EPP) on life

Mikey’s quality of life, like all patients with Erythropoietic Protoporphyria (EPP), is severely affected. Severe pain forces him into living a nocturnal life or enduring outdoor activities in great discomfort or pain.

Isolation and unrelenting pain from sun exposure greatly impacts the quality of life of EPP patients. With no effective treatment currently available to them, sun avoidance is their only option. Forced to remain indoors, EPP patients eventually succumb to a nocturnal existence, the only way of life for many porphyria patients.

Throughout his life Mikey has been unable to experience the outdoor activities that many take for granted without the protection of clothing that completely blocks the sun such as a boiler suit, balaclava and gloves. Socialising with friends is difficult and “the pain just isn’t worth it” so he avoids social situations where he will be outside.

Most people cannot understand how sensitive EPP patients are to sunlight and the intensity of pain they experience when exposed.