Affected by Charcot’s disease, he films himself on YouTube to leave a trace

THE ESSENTIAL

  • ALS is caused by the progressive death of motor neurons, the nerve cells that direct and control voluntary muscles.
  • Most often, it is the attack of the respiratory muscles which causes the death of the patients.

“My name is William. I am 52 years old and I was diagnosed with Charcot’s disease a year and a half ago”. In an interview with Huffpost, a father tells how he discovered that he had Charcot’s disease (or amyotrophic lateral sclerosis, known as “ALS”). “The first symptoms were fatigue and loss of balance: I was doing a lot of running and more and more often, I happened to fall for no reason. I also had small twitches of the muscles. At first, it didn’t worry me at all, but as it persisted, I was consulted, and very quickly, in 15 days, I was diagnosed”, he remembers.

Severe degenerative disease

In February 2021, William created his YouTube channel with a very specific objective. “The goal is to leave a mark for my loved ones, my children and my grandchildren that I may never know” he explains in his first video.

Amyotrophic lateral sclerosis is a serious and disabling degenerative disease, which leads to death within 3 to 5 years of diagnosis. “The research effort that has been dedicated to it in recent years has made it possible to significantly develop knowledge of its genetics and biology. And if no curative treatment is yet available, the medium-term prospects are encouraging”, indicates Inserm.

Symptoms

Symptoms of Charcot’s disease are characterized by complete paralysis of the muscles of the arms, legs, mouth and tongue area, as well as respiratory muscles. “This leads to an inability to use his arms, walk, eat, talk and breathing difficulties that gradually set in,” explains the Brain Institute.

ALS currently affects 5,000 to 7,000 patients in France with an annual incidence close to 2.5 per 100,000 inhabitants. “Clinically, ALS begins on average at the age of 55-60 years with a very low male preponderance”, indicates the arsla.

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