Epilepsy is a common but poorly understood disease. Patients who suffer from it, their loved ones, medical and educational teams plead for a better understanding. Report in Haute-Garonne with young patients.
More than 50 million people worldwide, including 650,000 in France, suffer from epilepsy, the second most common chronic neurological disease. Despite these figures, patients and their loved ones regularly plead for epilepsy to be better understood and not be reduced to received ideas that lead to situations of rejection. The international day of epilepsy, which has just taken place, recalled this message.
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“In 90% of cases, these young patients are singled out”
In Léguevin, Haute-Garonne, the “Castelnouvel” health care children’s home (MECS) welcomes nearly 80 young people – children, adolescents and young adults – suffering from drug-resistant epilepsy. The unstabilized form of the disease and the treatments have a strong impact on the daily lives of these patients. Disorders of attention, memory, absences, slowness, fatigue and motor disorders are also manifestations of epilepsy, of which the general public very often only experiences seizures with convulsion. “As it cannot be seen, epilepsy is little known but when it is seen, when there are convulsive seizures, it is very scary. In 90% of cases, these young patients are singled out, drop out of school and are socially excluded. We are involved in a process of reconstruction so that they have the most normal life possible, we receive children who are very damaged by the disease”, explains Valérie Rouvel, head of the educational department of Castelnouvel where schooling, with a boarding school, is offered from kindergarten to vocational high school. The “leavers” unit accommodates, in apartments with educational presence, young people ready to work in adapted companies.
Roommate and first job for Célia and Ana-Rita
Since September, the Castelnouvel teams have been experimenting with shared accommodation for three young people. Célia, Ana-Rita and Xavier live in an apartment in Colomiers, where they learn to live with greater autonomy after many years spent in the “bubble” of the MECS. Two educators visit them every evening to help them organize shopping, meals, cleaning and administrative procedures. “These young people have gained confidence. Before, they were always waiting for our validation, there we feel they are able to live alone every day”, underline Clarisse Galiano, specialized educator, and Romane Letexier, educator instructor. The experience is already paying off: Célia and Ana-Rita, 21, have just won their first employment contract in an ESAT (Establishment and services of help through work), the first in green spaces, the second in the laundry . And they are delighted.
“In kindergarten, they called me the dangerous girl”
“When I work, I forget about the disease”, sums up Célia. The young woman explains that she learned to ignore people’s gazes but remembers well being nicknamed “the dangerous girl” in kindergarten because of the behavioral problems that epilepsy triggered. “When I was 12, the other children told me ‘get out, we don’t want your dirt’ and the parents in the neighborhood were afraid of my disease. I would like people to be informed, that it is a brain disease”, testifies the young girl who plans to live soon in her own apartment.
A disease of various forms
Epilepsy is a chronic neurological disease that affects approximately 1% of the population. It is characterized by the occurrence of seizures in various forms, visible (convulsion, tremors, falls, etc.) or invisible (absences, concentration and memory disorders) following a sudden and transient disruption of the electrical activity of the brain. . Epilepsy can come from lesions of the brain following a cranial traumatism, a cerebral malformation, a CVA, an infection (encephalitis, meningitis), a tumour. It can also have a genetic origin or have no known cause. In 30% of patients, treatments are ineffective
Children (50% of epileptics in France are under 20) and the elderly are the most affected by the disease: in one case because the brain is under construction, in the other because it is aging.
Information on the website of the Epilepsie France association: http://www.epilepsie-france.com or on the website of Lou Têt, La Maison des Epilepsies en Occitanie: https://lmdemidipyr.simdif.com