Thierry, 58, a father from Reunion with Charcot’s disease: “I have between 3 to 5 years left to live”

58-year-old Thierry has amyotrophic lateral sclerosis (ALS) / Charcot’s disease. He was diagnosed a year ago, a blow for this father who loses the use of his limbs and his speech. The doctors tell him that he has between 3 and 5 years left to live. Thierry agrees to testify for LINFO.re.

This Tuesday, June 21, is World Charcot Day or Amyotrophic Lateral Sclerosis (ALS). It is a rare and serious neurodegenerative disease. The origin of this disease is still unknown at the moment.

A race against time

On July 15, 2021, specialists diagnosed Thierry, the father of a family from Reunion, with amyotrophic lateral sclerosis (ALS) / Charcot’s disease. Thierry had lost a lot of weight and also the use of certain parts of his body (legs, arms, tongue, etc.). After several examinations, the doctors tell him that he has between 3 and 5 years left to live.

Thierry then wants to fight to achieve his goals and does not want to give up: “It’s a real blow. It happened overnight, we can’t expect it. It can affect anyone. In Reunion today we are around fifty and there is no there is no treatment. I want to fight to continue living and try to advance research”, he explains.

Thierry has two forms of the disease: bulbar and spinal. For the bulbar form, the father of the family loses the use of his tongue, he cannot articulate normally and feeds with difficulty. For the spinal form, his right arm, his right leg are atrophied.

Sudden weight loss in a person is one of the first signs of Charcot’s disease.

If you want more information, you can visit the website: Arsla.org

Matthieu Patou-Parvedy

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