CUTIS LAXA : Story of a rare disorder - Boiteux, Marie- Claude
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Cutis Laxa is a very rare disorder that damages elastic fibers in all our organs. Thus our skin, the biggest organ of our body, is particularly affected and the children diagnosed with Cutis Laxa have a wrinkled skin, prematurely aged. The blind search for, and confirmation of, diagnosis , loneliness, others' gaze, the burden for patients and families, hospitalisation ... Testimonies from patients and parents take us through the painful world of rare disorders.From isolation to setting up an association, we understand how important it is for patients to break their loneliness.The international…mehr

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Produktbeschreibung
Cutis Laxa is a very rare disorder that damages elastic fibers in all our organs. Thus our skin, the biggest organ of our body, is particularly affected and the children diagnosed with Cutis Laxa have a wrinkled skin, prematurely aged. The blind search for, and confirmation of, diagnosis , loneliness, others' gaze, the burden for patients and families, hospitalisation ... Testimonies from patients and parents take us through the painful world of rare disorders.From isolation to setting up an association, we understand how important it is for patients to break their loneliness.The international meetings organised by the association " Cutis Laxa Internationale " have a hugely positive long-term impact for patients who attend - they clearly recognize that something very strong happens during these meetings. Nevertheless, all those lives and those stories bring hope . Cutis Laxa Internationale is a non-profit organisation, registered under the French law of 1901. It is run solely thanks to members and donors who support it.
Autorenporträt
Je suis juste une maman. Mais en 1990 la naissance de ma fille, Cécile, a fait de moi la Présidente d¿une association, Avocate des maladies rares, Experte médicale, Représentante des patients, Organisatrice d¿Evènements. Ma fille avait 2 ans quand une maladie génétique a été diagnostiquée: la Cutis Laxa. Maladie et solitude, Double fardeau ¿