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Xeroderma Pigmentosum Our twins, Thomas and Vincent, were born in September 93. All was perfect, until the appearance, at about the age of two, of freckles on Vincent’s cheeks and a stye on one of Thomas’s eyelids. Fortunately, the dermatologist we consulted suspected at once Xeroderma Pigmentosum, and his diagnosis was later confirmed by the analysis of Thomas’s lesion (carcinome spinocellulaire) and then again by the molecular diagnosis of Dr. Sarasin. Vincent actually developed three cancerous lesions within the four months following the diagnosis. In a matter of a few month, the well-regulated of our family was completely shattered. We found ourselves faced with our uncertainties and lack of knowledge. Indeed, even though our dermatologist was able to explain about the disease, nobody could tell us how to deal with it from day to day, except the usual recommendations. Thanks to unfailing faith in our scientific education, we gradually found solutions and learned how to live differently for Thomas and Vincent’s sale, without ever forgetting our three other children spared by the XP. Eleven years later, no other malignant lesion has appeared. We know that we can do nothing but delay the inescapable outcome, but we keep fighting hard to push it back. As we are aware of being on the right way, i.e. offering our children a sheltered life but still totally fulfilling, we have decided, with some close friends, to reach out to the other families struck by the disease and help them alon Françoise et Bernard Séris. |
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Last update: 12/04/2007
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