Toulouse. Condemned by Charcot's disease, artist and activist Karine Brailly has died

“The SLA collective is sad to announce that our friend Karine Brailly died last night”, announced this Thursday January 16, 2025 at midday on social networks this association helping victims of Amyotrophic lateral sclerosisbetter known as Charcot disease. “We send all our condolences to his family and loved ones,” he said.

According to our information, the painter from the North and based in Toulouse died on Wednesday January 15 around 9 p.m., at Purpan hospital.

She was able to benefit from the deep sedation she requested

According to one of his relatives, contacted by Toulouse NewsKarine Brailly was therefore able to benefit from deep sedation that she requested, although the protocol she was to begin on Tuesday was postponed, the medical profession having, according to our information, re-questioned ses motivations at the last moment.

Karine Brailly's final battle

As Toulouse News reported at the beginning of January, Karine Brailly had started hunger strike since December 30 to alert people to the situation of people affected by Charcot disease. “This is his last fight,” confided one of his caregivers.

She was hospitalized in December in Purpan, with the firm intention of carrying out a final battle : alert you to the situation of people suffering from this disease.

An incurable degenerative disease

Karine Brailly, 56 years old, had suffered from this condition since 2013. degenerative disease which results in a progressive paralysis of the muscles. Lately, she could only move her mouth and eyes, and was breathing using a machine.

“Progressively, the brain is no longer connected to the muscles, and unfortunately, no cure is possiblefor this illness,” explained Daphné, one of his caregivers.

An artist who has long painted with her eyes

Although she has a 14-year-old child, Karine Brailly had lived alone at home for eight years. Alone, or almost, because she was constantly accompanied by at least one caregiver, having “become totally dependent”. She had been “bedridden on a medical bed” for months.

Despite the illness, the painter still worked on the computer thanks to eye controls allowing him to paint with the eyes. But about a year ago she had gave up his passion after a succession of “health concerns” since his tracheotomy.

She invoked “the right to try”

Denouncing “forced hospitalization” and the impossibility of living at home due to a lack of sufficient care assistants, Karine Brailly had hunger strikeon the eve of New Year's Eve. “His last fight to publicize the daily life of Charcot patients and their caregivers,” recalled his caregiver.

“Today, she can no longer suffer as much,” she added. Victim of “permanent pain that she can no longer bear” and “low morale”, the painter had requested death by sedation. After 12 years of fighting against amyotrophic lateral sclerosis, Karine Brailly invoked “the right to try”, because the victims of her disease “are condemned”.

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