Xeroderma Pigmentosum


Some people have to stay out of the sun at all cost, because sunlight can be deadly to them. It’s the result of an extremely rare genetic disorder called Xeroderma Pigmentosum, or XP. The condition makes their skin extremely sensitive to sunlight and unable to repair after UV light exposure.
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As a result, XP patients learn to live at night. There’s even a summer camp for children growing up with XP. They can have fun and meet other children facing the same challenges.
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La protoporphyrie érythropoïétique (PPE) est une maladie ultra-rare, qui ne touche qu'une soixantaine de personnes en Suisse. Elles doivent fuir la lumière du jour, sous peine de douleurs insupportables. Pourtant un traitement existe, mais il n'est quasiment plus remboursé depuis que son prix a fortement augmenté. Des malades avaient commencé à revivre. Ils sont aujourd'hui renvoyés à leurs souffrances, jugées trop chères pour qu'on les soulage.
Extrait de 36.9° du 26 octobre 2016.
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