Suffering from Charcot’s disease, William films himself to “leave a trace”

Like William, which you can see in the video above, it starts with a loss of the ability to move the arms, the legs. Then when the muscles of the diaphragm and the chest wall are affected, the patients lose their breathing capacity and are put on assistance. According to medical statistics, death usually occurs between 3 and 5 years after diagnosis.

The 52-year-old father was diagnosed in December 2020. “The first symptoms were fatigue and loss of balance, he explains to the HuffPost. I was doing a lot of running and more and more often I fell, for no reason. Seeing that the symptoms are getting worse, he decides to go to a doctor. Two weeks later, the verdict is in: he has Charcot’s disease. His neurologist tells him that he has a life expectancy of 3 years, maybe 5 years if he is lucky.

Videos to help and leave a memory

The acceptance of this fatal outcome is done in several stages. “At the beginning, I was in denial because, as the symptoms were not very present, I did not feel sick”, says the Lyonnais. Followed in a regional ALS center, he refuses to go there for fear of “crossing paths with other patients who would be in a more advanced state”. Then, little by little, by going on social networks and discussion forums, he realizes that “a life is still possible”. This was the trigger to “accept the disease”.

At the time of diagnosis, this former computer engineer had never heard of the disease. Searching the internet for more, but he can’t find any patient testimonials. He then created his own YouTube channel in February 2021, on which he posted informative videos about his illness, but also about who he is, his passions, his former profession… “The goal is to leave a mark for my loved ones, my children and my grandchildren who I may never know,” William points out in his first video.

Although he had to give up racing and motorcycling, his two great passions, he did not lose his taste for life. “It is better to try to take advantage of the time that remains as best as possible, to try to continue to be happy, rather than to see everything in gloomy and to want to leave earlier”, specifies the father of 3 children to the HuffPost. Well surrounded, “it’s for my loved ones that I cling”.

See also on The HuffPost: Hyperphagia, eating without being hungry and without being able to stop


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