It kills an average of four people a day in France. However, amyotrophic lateral sclerosis is still relatively unknown. June 21st marks International Charcot Day. The associations work to ensure that ALS is recognized as a major national cause.
“Gilbert, he was the best man in the world, my best man. Everyone appreciated him. In addition, more than a thousand people attended his funeral.”
Jean-Paul Malabous lost his best friend to Charcot’s disease four years ago. Since then, he has worked tirelessly to raise awareness of ALS, or Amyotrophic Lateral Sclerosis. Based in Plougastel (Finistère) and ARSLA coordinator in the department, Association for Research on ALS, he hopes that this incurable disease will soon receive the label “Great National Cause”.
Charcot disease is a neurodegenerative disease. ALS affects neurons (nerve cells). It prevents the transmission of information between the brain and muscles throughout the body.
According to people, it begins with spasms, fasciculations [NDLR : contractions involontaires des muscles moteurs] even falls. Gradually you lose the ability to walk, then the ability to feed yourself, and finally the ability to swallow. The patient gradually mourns the loss of his functions. But the brain remains intact.
“My friend Gilbert, who was a logistician and very active, was able to continue working part-time a year after his illness was diagnosed. He was 59. He left when he was 62.”
Like him, it is estimated that an average of four patients die of ALS every day in France. Five people learn every day that they have this incurable disease. In general, life expectancy from diagnosis varies between three and five years. In rare cases, it can develop slowly. “I support a gentleman who has been living with Charcot’s disease for nine years”explains Jean-Paul Malabout.
Charcot disease affects twice as many men as women. Generally, it occurs around the age of 60. But there can be genetic forms. “I knew Marco, he died of it at the age of 38. His mother had succumbed to the same disease when she was 42. But that is rare.”. It is estimated that between 7,000 and 8,000 people suffer from ALS in France.
Even though it is the third most common neurodegenerative disease after Alzheimer’s and Parkinson’s, it remains unknown. “My friend Gilbert experienced a delay in diagnosis. His treating doctor had never seen ALS! We had to wait for him to be treated at the Brest University Hospital where the Resource Center and Breton Skills for ALS are located. He learns that he had Charcot’s disease,” remembers Jean-Pierre Malabout.
“By making it a big national cause, we hope to highlight the disease not only among healthcare professionals for better care, but also among the general publicorganizing public generosity campaigns and broadcasting messages for free on TV channels and public radio stations.
And to add: “We would also like to benefit from additional help to support carers, in particular to consult psychologists and organize more frequent discussion groups”. Currently, ARSLA organizes one every month via video conference. “In Finistère we bring nurses together twice a year just so they can talk to each other. It is also an extremely distressing disease for those around you.”
Finally and foremost, ARSLA’s goal is to accelerate research. Discovered by Charcot almost 160 years ago, the causes of the disease are still unknown and it remains incurable.
An online petition calls for ALS to be recognized as a Great National Cause. She collected more than 100,000 signatures. It is also possible to donate on the ARSLA website.
After Violence Against Women (2018 and 2019), the Great National Cause is read for 2021-2022.