Erythropoietic protoporphyria (EPP) is a rare and severe UV/light related skin disorder. This video, from Clinuvel, outlines EPP and its impact on quality of life.
The Australian outdoor lifestyle has ingrained in us a distinct awareness and understanding of the dangers of sunlight and UV exposure. This unique insight makes knowledge of photodermatoses (UV/Light related skin disorders) all the more profound.
Erythropoietic protoporphyria (EPP) is a rare genetic disease where patients have a deficiency of an enzyme called ferrochelatase. Because of this deficiency, these patients are unable to convert the intermediate protoporphyrin IX (PPIX) into heme, one of the key components in blood. As a result, the PPIX chemical accumulates in the body, particularly in the skin and liver. When exposed to light and UV, PPIX causes a phototoxic reaction, resulting in intolerable burning pain and causing EPP patients to avoid light/UV exposure.
Clinuvel, an Australian Company, understands the nation's love of the great outdoors and the needs of people globally suffering from acute UV and light related disorders.
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