International Epilepsy Day this Monday, February 12: the struggle for patients to access sports

Une meilleure inclusion des malades passe notamment par la labellisation des clubs, sur fond de formation des éducateurs.. MAXPPP – Alexandre MARCHI

Des études récentes démontrent les bienfaits du sport pour les personnes souffrant d'épilepsie. Mais trouver une place dans un club relève trop souvent du parcours du combattant concernant une maladie encore très mal acceptée.

There will certainly be some epileptic athletes in the stadiums of the Paris Olympics this summer. But they will do everything to keep this from finding out. Admitting to such an illness often proves prohibitive in finding a club at the highest level. A truth all the more painful for amateurs.

Also read: Epileptic and world champion: Marion Clignet, the former cyclist who became a standard bearer for the sick

However, the benefits of sports practice are proven for people suffering from this electrical dysfunction of the brain. They are recalled in a study carried out in 2018 by Arnaud Biraben, neurologist and neurosurgeon in Rennes. Sport would allow patients in particular to "probably reduce the frequency of seizures, improve morale and prevent possible depression, minimize the risk of obesity and osteoporosis.& ;quot;

A scary disease

Not recommended in the 60s-70s by the American Medical Association, the practice of sport has been recommended for epileptics for less than 30 years. The only prohibited disciplines: base jumping and scuba diving.

The cycling tour of Europe of a young Sarthois

Âgé 24 years old, Loïs Bodin is a graduate of from the School of Arts and Crafts and engineer in charge of project in a company in the south of Sarthe. Suffering from epileptic seizures for 4 years, he is forced to take quite heavy treatments. However, he launched himself into the fight. since April 2023 in a Tour of Europe lasting more than a year which will take him through 23 countries. Currently in Italy, he hopes to complete this journey of more than 16,000 km with the aim of raising awareness of epilepsy. It is possible to follow his Purple Tour and support him via the following link.

https://www.helloasso.com/associations/epilepsie-france/collectes/lois-purple-tour

General Secretary of the Epilepsy France Association for 12 years, Gilles Guibert nevertheless recognizes the extent of the work to be done to make a place for patients in the associative sporting world :"As for the high level, we are fighting for them to be accepted by the Adapted Sports Federation even though epilepsy is not a mental disability. But for this to happen, the federation would have to modify its statutes."

The presence of a loved one is often imposed

A very difficult inclusion in society in general: "She accepts more and more psychological or mental handicaps which are visible. But in the case of epilepsy, it's invisible and when it becomes invisible during very spectacular seizures, it's scary, notes Gilles Guibert.< /p>

Clubs that agree to dismiss minors therefore often ask a relative to be present at each training or competition to be able to manage crises. On the contrary, rare structures play the game to the fullest by being labeled 'disability sport'. with specific training for educators.

"This is very important because epilepsy is a disease that isolates patients who cannot drive and the practice of sport contributes to reweave this social bond that they lack, insists Gilles Guibert. I also regret that the Sports Pass of 30 € allocated to people receiving a disabled adult or child allowance is reserved for people under the age of 31."