CELEBRITIES WHO FIGHT AGAINST DISEASE
“It’s a disease that can affect anyone.“. At the age of 77, Senator Gilbert Bouchet is touched by an illness that is slowly eating away at him : Charcot disease. Nevertheless, he finds the strength to continue to appear in the Senate chamber, like this Tuesday, October 15, to carry, with a weakened voice, that of patients like him who no longer have enough to be heard. But what is this disease which affects 6,000 to 7,000 people in France?
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Emotion in the Senate
In a wheelchair, respirator on his face, but still with his suit and tie tied around his neck, Gilbert Bouchet overwhelmed the Senate chamber with a wave of emotion. This managed to rally all political parties around a text of law for better care of patients suffering from Charcot’s disease.
Senate politicians all hailed the immense courage shown by Gilbert Bouchetextremely weakened.
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What is Charcot disease?
Also called amyotrophic lateral sclerosis (ALS),Charcot disease condemns patients to progressive paralysis which spreads throughout the body, leading to death within 3 to 5 years, on average. It is characterized in particular by a progressive loss of motor neurons in the brain and spinal cord. It is, moreover, the most common motor neuron disease.
Generally, deaths from Charcot disease are linked to respiratory failure. What if life expectancy most often varies between 3 and 5 yearssome patients (around 10%) can nevertheless live up to 10 years with the disease. This most often sets in painlessly, to the point of causing a “muscle wasting associated with fasciculations (spontaneous twitching of the muscle)“, explains the website Civil Hospices of Lyon.
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And the disease is usually not related to family historyits diagnosis still requires tests at this level, but also “l’clinical examinationelectromyogram, and on the elimination by appropriate examinations such as brain and spinal MRI of diseases that may resemble ALS“. On the treatment side, only RILUZOLE has proven to increase the life expectancy of patients.
“Hinderances in the social care of patients”
And support is recommended, even essentialto treat Charcot’s disease, it still remains far too difficult to access for all patients. This is therefore the heart of Gilbert Bouchet’s bill. “I had to buy the electric wheelchair that suited my disability myself.“, lamented the senator before detailing the “brakes in the social care of patients, in particular the discrepancy of procedures with the temporality of the disease and the unequal treatment of people according to their age“.
Its text having been adopted by the Senate, must now be transferred to the National Assembly. It asks, among other things, to compensate for the delays considered to be far too long for processing what are called requests to obtain the disability compensation benefit (PCH). This service is awarded to support the human and technical needs of patients.
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Indeed, this period of 5 to 9 months is considered incompatible with this disease and all others whose symptoms worsen rapidly. Gilbert Bouchet’s text thus provides for a “derogation procedure“processing PCH applications, also setting a “age barrier” which limits its access to patients requesting it before the age of 60.
Sources used:
AFP
Civil Hospices of Lyon
