“For me it’s too late, I’m going to die, I have to accept it.” It is a heartbreaking letter that Julien Maurel sent to all the French deputies. Suffering from Charcot’s disease, also known as Amyotrophic Lateral Sclerosis (ALS), this 45-year-old man points out the inaction of the health authorities in the face of this motor neuron disease, but above all the indifference faced by patients.
“I have lost everything”
It was four years ago that the forty-year-old felt the first symptoms of the disease: severe exhaustion, ants on his hands and increasingly difficult to express himself.
Two years later, the terrible verdict falls, he suffers from Charcot’s disease, which gradually locks the patient in his own body. Today, Julien can barely speak, uses a wheelchair and finds himself unable to make the slightest gesture.
“They told me I had Charcot disease. In a few years I lost everything and today I find myself in a wheelchair, a quadriplegic,” he told BFMTV.
On a day-to-day basis, it is now impossible for him to perform the gestures he used to, such as hugging his two daughters or playing rugby.
“we don’t matter”
With his letter to elected officials, Julien hopes to move the lines and make people understand the loneliness of the 5,000 to 7,000 affected people in France. “A deathly silence reigns,” the letter begins.
“You have the power and the duty to give us the opportunity to heal. For me it’s too late, I’m going to die, I have to accept it. But my fight goes beyond me, ”she said, pointing to the foul. of the resources allocated to research.
“Nobody cares, we don’t count. I think it’s unfair,” he says again.
In this letter, the forty-year-old also lifts the veil on his increasingly difficult daily life, also illustrated by Mariamane, his caretaker, who lists the tasks for which she is responsible. “I have to do everything for him, blow his nose, take him to the bathroom, give him a drink,” she said.
Respiratory muscles affected
A neurological and degenerative pathology that affects the central nervous system, Charcot’s disease remains a mystery, the origin of which is not fully known and for which there is no treatment.
According to the Inserm website, it leads to the death of the patient “within 3 to 5 years of diagnosis.” “Most of the time, it is the attack of the respiratory muscles that causes the death of the patients”, we still learn.
In recent weeks, the disease has returned to the news when the sports journalist and former PSG president Charles Biétry trusted that he had it and, therefore, he claimed to have prepared his assisted suicide in Switzerland. Pone, a former member of the Marseille rap group Fonky Family, also affected, has published a book, a little furtherin which he recounts his daily life.
Source: BFM TV
