About CLINUVEL

"Separate yourself from the pain"

06 Jan 2010

Adrian was diagnosed with the genetic disease Erythropoietic Protoporphyria (EPP) when he was 5. Exposure to light causes him excruciating pain.

EPP is characterised by the accumulation of toxic compounds in the body of patients. Exposing an EPP patient’s skin to light, particularly blue light, causes excruciating pain: intense burning, stinging heat. Adrian describes EPP as similar to having badly sunburnt skin scrubbed with a wire brush. Swelling and blistering can also form after extended time exposure. Even artificial lights, such as those in supermarkets and laptop screens can cause acute pain.

EPP is a lifelong disorder presenting in early childhood. The onset of the disease is traumatic for both children and parents.

Sun avoidance is the mainstay of treatment for EPP: patients are often forced to remain indoors, severely affecting their quality of life. Eventually a nocturnal existence is the only way of life for many porphyria patients.

Currently, there is no proven effective treatment or prevention method for EPP.

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