November 29 and 30 will take place on Telethon 2024. An event created in the 80s which continues and allows helping families to come together. This year, the ambassador of the event is Paul Crolarda little Dinardais aged 4 years. In a report published by the AFM Téléthon, his mother, Marie, testifies (source 1).
A rare genetic disease
Since birth, Paul has suffered from epidermolysis bullosaa rare genetic disease for which there is no treatment yet. “It’s such a rare disease that it’s definitely not going to be that,” Marie explains in the report.
According to the Haute Autorité de Santé (HAS), epidermolysis bullosa is characterized “by localized or generalized fragility of the skin and/or mucous membranes” (source 2). A disease that develops in newborn or the child but rarely in adults. If the severity varies from one child to another, “ranging from moderate localized forms to generalized formssevere potentially lethal and particularly disabling”, Paul Crolard has a “severe” form, confides his mother.
Skin as fragile as that of a butterfly
“He’s a butterfly child, because his skin is as fragile as a butterfly’s wings,” she says. At the slightest friction, shock or blow, the skin peels off and forms…
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