"The fear of what lay ahead" - Erythropoietic Protoporphyria (EPP)

Raising children with Erythropoietic Protoporphyria (EPP) is a traumatising experience, one which few parents are able to express or understand.

Exposure of skin to light, particularly light in the blue spectrum (400 nanometers wavelengths and beyond), causes deep burning, intense pain and scarring skin reactions. Parents helplessly witness the anguish of their children growing up in isolation.

Ralph and Wendy have raised two daughters with EPP. Their eldest daughter Angela experienced symptoms from birth but was not diagnosed until she was 3 years old. Without understanding the direct cause of her distress and without correct diagnosis, Ralph and Wendy witnessed their daughter's suffering for years.

As one of the most severe photodermatoses, EPP is generally misunderstood, a genetic disorder where severity of skin symptoms (phototoxicity) are not well known. EPP patients are completely intolerant to light and are at risk spending as little as five minutes outdoors.

Although their youngest daughter Lyndal was diagnosed with EPP at birth, she still had frequent intolerable reactions to sunlight. There is no effective medicinal treatment available for EPP, and for patients to avoid the light and sun for their entire lives is an impossible task.

For more information on EPP visit:

http://www.clinuvel.com/en/erythropoi...

To watch this video with German subtitles visit:
   • (German Subtitles) „Die Angst vor dem...  

To watch this video with Hebrew subtitles visit:
   • (Hebrew Subtitles) "The fear of what ...