“The cruelest disease in the world”: Charcot told by doctors and patients during a round table in Millau

magictr | March 2, 2024 | Business | No Comments

Arnaud Trémolet, affected by Charcot's disease, and his caregiver wife Célyne, both at the origin of this round table organized this Friday evening in Millau. Midi Libre – F.M

Le docteur Elisa De La Cruz, neurologue à la clinique motoneurone au CHU Gui de Chauliac à Montpellier, a été très pédagogue. Midi Libre – F.M

Une table ronde d'information sur cette maladie rare à l'initiative, notamment, d'Arnaud Trémolet, millavois diagnostiqué au printemps 2021 et son épouse Célyne.

Indispensable and wonderfully educational. The round table on Charcot's disease (ALS), organized this Friday evening in the (full!) amphitheater of 2ISA in Millau, was a moment where doctors, caregivers but also patients and caregivers were able to explain and discuss and, ultimately, enlighten the public about this rare disease. In the introduction, moved, the instigator of the meeting, Arnaud Trémolet, himself diagnosed in spring 2021 – "the announcement was the hardest, most brutal momentpt" – insisted on the need for awareness. "It’is a progressive disease qualified as the cruelest disease in the world by the WHO.& quot;

Neurologist Elisa De La Cruz from the motor neuron clinic at Gui de Chauliac University Hospital in Montpellier has, in successive touches, painted Charcot's picture. With his "progressive loss of strength, speech problems." Remembering, also, that a single drug has helped, since 1994, to "slow the progression of the disease." < /em>

Fundamental research and maintaining patients in employment

Hence the capital importance of research. Detailed chapter, with questions from Olivier Biscaye, editorial director of Midi Libre, by Valérie Goutines. The president of ARSLA, the national association for research on ALS which, thanks to private donations, supports fundamental programs each year to the tune of 1.5 M€, thus giving the figure of 230 programs aided since 1985 and the creation of ARSLA.

Rest – and that’s not nothing – the human side with keeping sick people at work. Two of them emphasized "the importance of continuing an activity." The example of Laurent Pernet from Isérois, diagnosed five years ago and who continues to work in his artisanal distillery in Vizille, near Grenoble, was worth a lot of talk.< em> "And he still drives his automatic transmission car" said his helping wife. "The neurologist gave him twenty years of life expectancy… and he is 56 years old."