It was in 2014 that the existence of Stéphane Landier, 45, was completely turned upside down. “Epilepsy changed my life overnight, loose there. I was a business owner and one day when I woke up, I had completely forgotten everything in my life, from earliest childhood to the present. I didn’t remember anything. “
Memory loss, a consequence of encephalitis, another rare neurological disease. The diagnosis falls: Stéphane has epilepsy. Except that at home, it does not manifest itself in tremors. But by amnesias, sometimes severe, and falls, often painful. Whether in his apartment, in Nantes (Loire-Atlantique), where he receives us, or while walking outside.
I have between one and four attacks per month
“Today I do between one and four attacks per month. Sometimes I fall, sometimes not. Memory loss is a little less common, but still a concern. We don’t talk about these other symptoms, and that’s the problem. Epilepsy is also mysterious for neurologists at times “, details the Nantais. Which has been falling more and more often lately, as evidenced by its bandage which hides a small scar on his left temple.
“There, I was unlucky, concedes Stéphane. To be honest, January 2020 was not a bad month for me. However, I have had epilepsy for almost five years. But the, I fell a lot. Besides, I would like to point out the professionalism of firefighters, who do an extraordinary job for people with epilepsy. “
And to recall the gestures to adopt when you come across an epileptic in crisis in the street: “You have to secure it, keep it from getting hurt. And if the crisis lasts more than a few minutes, call for help.“
My life is completely turned upside down
This big and solid fellow suddenly appears fragile when he talks about his illness. Every day, Stéphane takes four drugs, some the “Shootent” as he says, and can make him lose his words. But he lost a lot more since he got epilepsy.
“I lost my business, I can no longer work, I had big problems in my married life, summarizes, fatalist, the forties. The only positive thing is that I have kept a very pretty little girl. But my life is completely turned upside down. “
How exactly to hang on to the wagon of existence, not to let go and get carried away by illness? “It’s difficult, replies Stéphane aplomb. My case is a little bit complicated, for sure. Fortunately, 70% of people with epilepsy are treated thanks to the treatments that exist. But 30% are still drug-resistant, that is, the drugs have no control over them. We don’t talk about that. “
Hospitals don’t have much
What Stéphane also denounces is that he exists “few specialized doctors” for epilepsy and its various symptoms. A real problem according to him: “Hospitals don’t have much money. Public authorities and pharmaceutical companies must support research. And we need this disease to be better known to the general public, which is not currently the case. “
Despite everything, there is another alternative to drugs to treat epilepsy according to the former entrepreneur: “It exists electrical treatments in the brain. In fact, a Marseille laboratory has won a European prize in collaboration with a Rennes laboratory very recently in this context. But really, you have to more financial investments to advance science. “
What is he doing today to occupy his life, he who lost his job? He got involved. And not just a little. Responsible for partnerships withinEpilepsy France, Stéphane occupies the same function within another association, Aura healtcare, who developed “a patch to detect epileptic seizures upstream to prevent patients from falling and injuring themselves, using high machine-learning technologies “, he says with pride. “It will be a total revolution for all drug-resistant epilepsies. “
An ambitious project for Stéphane who, despite his illness, remains optimistic: “Even when one is a particularly heavy case like mine, it’s possible to keep an almost normal life. “
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