On the occasion of the official launch of the Telethon this Friday, November 29, Mayotte joins the national mobilization to support research on rare diseases. Between activities organized in Mamoudzou, families facing these challenges share their moving stories.
The 2024 Telethon starts today, Friday November 29, with a large mobilization across France and the overseas departments. In Mayotte, it was the investment of the island's firefighters, which brought life to the Place de la République in Mamoudzou.
Their objective is clear: to attract as many visitors as possible to raise essential funds for research into rare genetic diseases.
This mobilization takes on its full meaning in the face of the challenges faced by families affected by these diseases. Our editorial staff met two families, one in Petite Terre and the other in Grande Terre, who testify to their daily struggle.
Injections, at a monthly cost of 30,000 euros
Little Emna, suffering from a rare form of onanism, had her illness diagnosed when her mother was nine months pregnant. It was the start of a long fight with numerous trips to mainland France for treatment.
Thanks to a collaboration between metropolitan doctors and pharmacists from the Mayotte Hospital Center (CHM), a treatment was found: daily injections transported from the United States to Mayotte. These injections, at a monthly cost of 30,000 euros, allow Emna to progress and are fully covered by Social Security.
A rare genetic disease
Another mother recounts the ordeal she has been experiencing for four years, when her child's life was turned upside down following a simple knee injury. What seemed innocuous revealed a rare genetic disease.
Since then, this mother has experienced daily solitude, facing a pathology for which there is no specific treatment.
Rare diseases: families between hope and despair
France