Ève Gilles, Miss France 2024, has just revealed that she suffers from paroxysmal dyskinesia, a rare neurological disease. Explanations.
Muriel Kaiser
Written on 10/28/2024
Ève Gilles has suffered from paroxysmal dyskinesia since childhood — Screenshot from Instagram account @evegillesoff
The current Miss France suffers from a rare neurological disease. Ève Gilles confided for the first time about her paroxysmal dyskinesia to Konbini last October 26.
The 21-year-old young woman explains: “It’s an illness that took up a lot of space for me when I was little and I didn’t want it to define me as a woman. Today, what pushes me to speak out is not “It’s not just to make my illness known, it’s really to be a hope for these people who have invisible illnesses and who don’t know how to react, who are afraid of dreaming too big.”
“I don’t control my body”
Miss France 2024 continues: “When I was eight years old, I felt that I didn’t control my body over certain movements.” The diagnosis came a few years later, when Ève Gilles was 14 years old: it was paroxysmal dyskinesia. “These are movements that I cannot control, between 25 and 40 seconds. The attack can be more or less strong: one arm moving inward, my two arms or my whole body.”
She explains that the illness also impacts her face, which is why she closes her eyes during an attack. “When I feel my eyes going, I don’t want to be seen like that.”
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A rare disease that most often disappears
Ève Gilles confides that she followed treatment for several years by taking a medication used to treat certain forms of epilepsy and convulsions: Tegretol. And since she was 19, Ève Gilles has noticed a drop in the number and intensity of her attacks. This allowed him to gradually reduce the treatment.
Indeed, according to the site specializing in rare diseases Orphanet, “The frequency of attacks usually decreases with age in familial cases and the disease often disappears completely. Long-term life expectancy is not impacted.”
Paroxysmal dyskinesia, depending on its forms, affects between one person in 150,000 and one person in a million.
