Light for everyone – make treatment for the rare light intolerance disease EPP available
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The ultra-rare genetic condition erythropietic protoporphyria (EPP) forces us to a life in darkness and pain. We EPP sufferers demand access to the only treatment for our condition, which was already approved over four years ago!
A genetic defect, in which light is an enemy:
In EPP, only a few minutes of light exposure are sufficient to trigger a phototoxic reaction which causes severe burns inside the blood vessels, leading to excruciating pain which does not respond to any known painkiller and can persist for days. EPP sufferers therefore avoid all light sources, which leads to massive restrictions for them and their social environment. However, living completely without light is not possible: EPP suffers would only be safe in a dark cellar! We therefore endure not only light deprivation but also frequent episodes of excruciating pain since childhood, leading to social isolation, depression and despair.
Until recently, no treatment for EPP existed. As EPP symptoms are triggered by the visible light spectrum, sunscreens and other UV-protection measures are useless in this condition. 2014 however, the new active substance «afamelanotide» was approved in the EU for treatment of adult EPP sufferers. EPP patients receiving the treatment during the clinical trials and special access schemes were able to spend hours in direct sunlight and started an almost normal work and social life! Very importantly, the approval for adults will also enable the development of a formulation to treat children, the most vulnerable and severely affected group of EPP patients.
Please support us to bring light in our life!
Living in the dark and in pain knowing that a treatment exists is unacceptable. Please support us to live the normal and rich life we deserve.
Dr. Jasmin Barman-Aksözen
Scientific Advisor Swiss Society for Porphyria and Selbsthilfe EPP e.V. (until 2017), Vice-president International Porphyria Patient Network (IPPN)
We cordially thank Daniel Aufdermauer and Annie Gentil-Kraatz for the generous offer to use their photographs: www.aufdermauer.photo
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