Yasmina Kattou, edited by Solène Leroux
08:14, June 21, 2022
It is a fatal disease because there is no cure. This is World Charcot’s Day, a little-known neurodegenerative disorder that has affected between 5,000 and 7,000 patients in France. It is of genetic origin for 10% of patients. For others, it’s a bit like cancer, there are several factors involved: inflammation of the body, accumulation of protein … An “unjust” disease that cannot be cured, which has affected Christophe Malsot , 57, commercial director. He was traveling around the world, but since the discovery of Charcot’s disease 18 months ago, his condition has deteriorated.
Prisoner of his body
He now depends on his electric chair. “I don’t use my legs anymore and I don’t use my arms anymore. I’m really a prisoner of my body and therefore totally dependent, in essence, on the people around me,” he told the microphone. Europe 1.
“Today, when the diagnosis is made, you’re told you’re going to die. 80% of people go away in three to five years.” For his part, the commercial director tries to “maintain a ‘normal’ life, so as not to be completely disconnected from reality by saying to himself: ‘Anyway, I’m going to die soon'”.
“Only your eyes and brain work”
If he is clear about his condition, he has decided to start a search protocol for an American company, “in spite of everything”, an essay “piloted at the Pitié-Salpêtrière”. It’s “for a drug that allowed me stability.” A stopper treatment for disease progression and sound degradation. He explains: “You start not being able to breathe on your own, you lose your speech, and only your eyes and brain work.”
According to Christophe, “this is the reason why so many people [atteints] decide to say, ‘It’s over, I’d rather leave.’ “For him, the choice is already made:” If at some point it became too vegetative, that’s what I’d like to do. “