Millavois Arnaud Trémolet is working to bring Charcot's disease into public debate

Pour Arnaud Trémolet : “le but n’est pas de faire peur à tout le monde.” Midi Libre – F.M

Le quinquagénaire, lui-même atteint par cette maladie rare et neurodégénérative depuis le printemps 2021, milite avec fougue pour un discours lucide mais positif.

Charcot's disease (ALS) fell on him one day in April 2021. "I had never heard of it before. "  Arnaud Trémolet talks about'"a rare neurodegenerative disease much less known than sclerosis in plaques or Alzheimer's."Since the announcement of the diagnosis, the almost fifty-year-old has worked to communicate about this disease whose average life expectancy does not exceed five years. He got involved with the association for research on ALS (Arsla) by opening a fund, challenged local elected officials – notably the deputy Jean-François Rousset.

Between 1500 and 2000 new cases per year

"Charcot is, according to official figures, between 1500 and 2000 new cases per year with as many deaths."&nbsp ;Arnaud Trémolet details "8000 diagnosed cases declared with, often, an age of onset between 62 and 65 years." A disease that affects both men and women. Although research has not yet been able to identify real causes.

"There is genetic Charcot which represents 10 to 15%. This is not my case. This makes me a little more serene towards my son or my nieces…" It outlines two possible causes raised by the researchers: a mushroom in Isère and seafood from the Etang de Thau. "At certain periods they can produce toxins which are a triggering factor. In my case the doctors were unable to explain."

Montpellier is one of 19 national ALS centers

"And when I needed support from health professionals, here in Millau, I realized the problem ;absence of an organized network. With Charcot, passive physiotherapy is particularly needed. There is no link with Montpellier which is one of the 19 national ALS centers. This made us decide to do something."

Round table on Charcot's disease Friday March 1st in Millau

Announced as an information round table on ALS (Charcot's disease), the meeting on Friday March 1 will begin at 7 p.m. in the room of 2ISAn 32 avenue de la République in Millau (free access upon prior registration by email: teamarnaudmillaucharcot @gmail.com). Among the many speakers: Valérie Goutines (president of ARSLA), Doctor De La Cruz from the Gui de Chauliac motor neuron clinic in Montpellier with a large part of her team of caregivers and Doctor Soulier, occupational physician . The discussions will be moderated by Olivier Biscaye, editorial director of Midi Libre.

This something is going to be, a general public round table organized in Millau this Friday March 1st, International Rare Disease Day. "The rendez- was difficult for you to organize. There must be a trigger for local caregivers and elected officials. We will talk about the disease, the absence of a network towards which patients can be directed."
Arnaud Trémolet also announces "several testimonies from patients which will show that we can reconcile this illness with a professional life. I work myself. " Positive things that are particularly close to the heart of Millavois. "The goal is not to scare everyone."