“80% of people disappear between three and five years”

Yasmina Kattou, edited by Solène Leroux
modified to

8:14 a.m., June 21, 2022


It is a disease whose outcome is fatal, because there is no treatment. It’s World Day for Charcot’s disease, a little-known neurodegenerative disorder, which affects between 5,000 and 7,000 patients in France. It is of genetic origin for 10% of patients. For the others, it’s a bit like for cancer, several factors come into play: the inflammation of the body, the accumulation of proteins… An “unfair” disease from which there is no cure, which affected Christophe Malsot , 57 years old, sales manager. He used to travel around the world, but since discovering Charcot’s disease 18 months ago, his condition has deteriorated.

Prisoner of his body

He now depends on his electric wheelchair. “I no longer use my legs and I no longer use my arms. I am really a prisoner of my body and therefore totally dependent, in essence, on the people who are around me”, he says at the microphone of Europe 1.

“Today, when the diagnosis falls, you are informed that you are going to die. 80% of people disappear between three and five years.” For his part, the commercial director tries to “maintain a ‘normal’ life, so as not to be totally disconnected from reality by saying to himself: ‘Anyway, I’m going to die soon.'”

“Only your eyes and your brain work”

If he is lucid about his condition, he decided to start a research protocol from an American company, “despite everything”, a trial “piloted at Pitié-Salpêtrière”. It’s “for a drug that would allow me stability”. A treatment to stop the progression of the disease and the degradation of his body. He details: “You start not being able to breathe on your own, you lose your speech, and only your eyes and your brain work.”

According to Christophe, “this is the reason why many people [atteints] decide to say: ‘It’s over, I prefer to leave.'” For him, the choice is already made: “If at some point it became too vegetative, that’s what I would like to do.”

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