Jérôme, 51, is waiting for us in room 4 of the day hospital, at the “ALS” reference center at the Pitié-Salpêtrière hospital, in Paris (13th arrondissement). ALS, three letters for Amyotrophic Lateral Sclerosis, scientific name for Charcot disease. This engineer travels in a wheelchair that he hasoué while waiting for financial aid to be able to obtain a more suitable one – some cost more than €20,000. Jérôme requested anonymity: he does not want his employer to know the reasons for his disability. “I refuse the look of pity that people can cast on me, he says behind his surgical mask. And moreover, I do not want to be reduced to my pathology. »
The latter is classified by the World Health Organization (WHO) as “one of the cruelest in the world”.
“It only affects the motor system, most people keep their wits about them and are aware of their progressive loss of autonomy which can be total,” explains Pierre-François Pradat, neurologist and researcher, within this reference center which follows a cohort of around 1,400 patients. It is the largest in France, and it is located in the heart of the establishment where Dr Jean-Martin Charcot described the pathology for the first time, in 1869, and gave it his name. This disease is life-threatening within a median of three years. “When the diagnosis is made, a countdown to death begins, with an inability to know exactly how long one has left to live,” summarizes Christophe Coupé, doctor of psychology and clinical psychologist for the SLA network in Île-de-France and the Pitié-Salpêtrière reference center.
