The neurologist Javier Aparicio, head of the Epilepsy Unit at Sant Joan de Déu hospital, relates the case of a patient, a boy, whose school has forbidden him from going on an excursion. "He has been excluded from a social activity with colleagues", remarks the doctor. There can be no better way to increase the stigma ("Stain, scar or impression on the skin" or "sign of infamy, of moral lowness, of dishonorable leadership", according to DIEC definitions) associated with such a disease invisible and misunderstood like epilepsy. Instead of being interested in how to control a hypothetical crisis, the teachers have preferred to veto it, despite the fact that the activity is perfectly suitable for the student. How will this child feel? Rejected? Discriminated against? "This affects him, because he ends up seeing himself as different from the rest of his colleagues and he wishes not to interact with them", reports the doctor.
Parents and doctors from Sant Joan de Déu, with the collaboration of the Mar de Somnis association, strive to inform education professionals, monitoring or other social agents about childhood epilepsy with the aim of fight ignorance Incomprehension and stigma originate in ignorance, and a disease like any other becomes, for those affected, a social and self-esteem problem. "We want to make known one of the most prevalent chronic neurological diseases, with a high incidence between the ages of 6 and 14 (3.7 cases per 1,000 inhabitants) and which will continue when they are adults," Aparicio points out.
"The disease causes brutal social rejection", explains Anna Calixto. "When an epileptic crisis occurs in the cinema or in the series, it is always someone with convulsions on the floor and foaming at the mouth", he adds. Although the manifestations are diverse, they are never pleasant and tend to generate negative attitudes towards epilepsy. A survey found that more than half of people with this pathology in Europe feel stigmatized, with very high levels in France (66%) and more moderate in Spain (32%).
Marina, Anna's daughter, is one of these people. He just turned 21. She is studying a higher degree in Dietetics and Nutrition and nothing differentiates her from any young person her age. But he has a disability of 65% due to the epilepsy he was diagnosed with when he was two and a half years old. "One day he fell backwards at nursery school and they told me about it, another day the same thing happened to him at a relative's house and another at home. We took her to the emergency room and she passed the pediatrician. There was no doubt", explains the mother. It is a drug-resistant epilepsy, the worst type, which represents between 30 and 40% of cases. "We can improve crises, but not control them completely. They have to live with the crises and with the social problem they bring; rejected, discriminated against...", says the neurologist.
"It's an invisible disease, like diabetes or some heart diseases, but unlike the latter, it's not accepted", regrets Calixto. "At school, the classmate who falls to the ground unexpectedly is already the different one, already the one pointed out, the easy target for everything", he explains, and expands the accusation: "The Navy has received many attacks from teachers. Most have understood, but others have called me saying that my daughter was pulling their hair, that she was asleep, when what was happening was that she had many crises at night, did not sleep well and forgot what she had studied ... When she was doing a Nursing Assistant degree they even told her that why was she studying, if she had epilepsy she would never be able to work... Her colleagues didn't invite her to birthday parties, unless she had a crisis and the parents don't know what to do."
Faced with rejection, the natural response has historically been to hide the problem, which has increased ignorance and, consequently, the stigma and associated comorbidities. Now those affected raise their voices.
Specialists recommend that parents or children expose the problem in the classroom, in front of teachers and peers. "We have to talk about epilepsy because, the more people know about the disease, the less fear people with epilepsy will have to integrate into society.
With medication they can lead a perfectly normal life and it is necessary to facilitate their integration into the world of work and education. For me, as a mother, it has been a constant struggle with family members and teachers", says Anna Calixto.
