Par Frederic Jouvet
Published on
Residents of Le Mans and Allonnes (Sarthe), Elodie, Alexandre and Sébastien are subject to epilepsya chronic neurological disease characterized by the onset of seizures which correspond to a sudden and transient disruption of the electrical activity of the brain.
As the International Day ofepilepsy Monday February 13, 2023, they decided to testify to say stop to prejudices about their disease.
Prejudices about epilepsy in everyday life
All three were and still are victims of prejudice linked to ignorance of their disease, which affects 650,000 people in France. “The madness is coming back. And even me, at one time, I said to myself that I was not doing well morally, ”says Elodie.
The worst I had was madness, the fact that I had a contagious disease…. The disease is still demonized
The trio wants to deconstruct the imagination around epileptic seizures. Sébastien explains: “It manifests itself in many ways. Every person is different, every symptom is different.”
Tremors, falls, absences or difficulty concentrating are all symptoms possible, visible and invisible, of the disease.
This ignorance of the disease is coupled with a supported difficult: “there are very few epileptologists and there is a lack of neurologists specializing in epilepsy. At Le Mans hospital, there are two,” continues Sébastien, diagnosed at the age of 18 months after a medical error.
“I still have one or two generalized seizures a month”
There is no age to be affected by epilepsy. For Elodie, epilepsy has been part of her life since her 23 ans. “I had a lot of fever. Then convulsions and I fell in the coma “recalls the resident of Le Mans. She wakes up three days later. “I needed a lot of rehabilitation because I bit off half my tongue. Elodie then learns that she suffers from drug-resistant epilepsy.
She could have been operated on but the surgery is done to the millimeter. During the examination, the image was not of good quality to be able to carry out the operation. “I was put on a pacemaker 6 years ago,” she says. In other words, a kind of box that sends electric shocks to prevent the onset of an epileptic seizure.
A stigma that isolates
Alexander’s epilepsy started when he was 8 years old. His schooling was marked by the onset of his illness. “Everyone rejected me because of prejudice. People don’t know enough about the disease. As I was refused, I refused to go see them,” he says.
“It saves me a lot of crises and anxiety but I still have one or two generalized crises per month”, abounds the Mancelle. His device, however, was able to measure up to 12 triggers per day.
At the same time, she is still taking heavy medication in addition to anti-depressants, which she is gradually stopping.
“I only ask that to work”
Elodie is currently unemployed. “People don’t understand that we don’t work. I only ask that to work but no one takes us. People with epilepsy may have difficulty finding employment due to stigmaof their illness.
“Where I got out of my hinges was when I was told that we were people who have a hair in their hands and who don’t want to do anything with their day”, criticizes Sébastien.
Companies are convinced that people with disabilities can be a burden. In my job before, the company saw that I was going slower but my job was done. He wanted yield, yield, yield.
Now he works as an accounting secretary in a firm: all his colleagues are aware of his epilepsy and he has a button to alert them in the event of a crisis. “I can feel my crises coming, but that’s not the case for everyone,” he says.
Alexandre, for his part, has been able to find a job as a dock attendant for 7 years. “I found work thanks to my boss who knew about the disease. He had an epileptic son: that’s how I got my job,” he explains. In fact, he was better able to understand Alexander’s illness. “After school, many rejected me because of the disease. »
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