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Today Cover topic
Xeroderma Pigmentosum
Types
Symptoms of Xeroderma Pigmentosum A Rare Disease
Treatment for a Xeroderma Pigmentosum A Rare Disease
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Thomas et Vincent sont deux jumeaux bordelais, souffrant de la maladie des enfants de la lune. Une maladie génétique rare qui les très vulnérable au rayon du soleil. Malgré les lourdes contraintes que leur situation implique, ils font preuve d’un courage et d’un état d’esprit positif remarquable !
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In France, Thomas and Vincent have an extremely rare condition, that makes it impossible to step into ultraviolet light. This would instantly result in skin cancer.
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This video talks about Xeroderma pigmentosum | What is the main cause of xeroderma pigmentosum? | treatment of XP | USMLE
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A young woman’s skin blisters and burns if she is exposed to only a few minutes of daylight. Lizzie Tenney suffers from the rare, and extreme, skin disorder Xeroderma Pigmentosum. With there only being around 300 diagnosed cases in the United States – it makes Lizzie one in a million. Xeroderma Pigmentosum commonly known as XP, is a rare degenerative disease, causing the skin to be unable to repair its own DNA once exposed – and damaged by – the sunlight’s harmful ultraviolet (or UV) rays, even resulting in skin cancer, neurological problems and developmental delays. In Lizzie’s case she has had skin cancer surgery 43 times. The 22-year-old, from Highland, Utah, has to use a specially-designed metre that measures the level of UV rays and tells her when it is safe to go outside.
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Olivia padece de xerodermia pigmentosa, una enfermedad que hace que la piel no pueda tener contacto con los rayos uv, ya que no sabe defenderse ante ellos y genera cáncer a la piel. Hoy asiste junto a su familia a la consulta de la Dra. Emma para su revisión cada 4 meses.
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