Allies against the stigma of childhood epilepsy: "You are the marked one, the easy target"

The neurologist Javier Aparicio, head of the epilepsy unit at the Sant Joan de Déu hospital, recounts the case of a patient, a boy, who has been forbidden by his school to go on excursions. “He has been excluded from a social activity with peers,” remarks the doctor. There can be no better way to increase the stigma (“Mark or sign on the body” or “Disgrace, affront, bad reputation”, according to RAE definitions) associated with a disease as invisible and misunderstood as epilepsy. Instead of being interested in how to handle a hypothetical crisis, the teachers have preferred to put a veto, despite the fact that the activity is perfectly suitable for the student. How is this child going to feel? Rejected?, discriminated against? “This affects him because he ends up looking different from the rest of his classmates and he will want to not interact with them,” denounces the doctor.

Parents and doctors from Sant Joan de Déu, with the collaboration of the Mar de Somnis association, strive to inform education professionals, monitors or other social agents about childhood epilepsy with the aim of combating ignorance. In ignorance, misunderstanding and stigma originate, and a disease like any other becomes, for those affected, a social and self-esteem problem. “We want to publicize one of the most prevalent chronic neurological diseases, with a high incidence between 6 and 14 years of age (3.7 cases per 1,000 inhabitants) and that will continue into adults,” says Aparicio.

“The disease causes brutal social rejection,” explains Anna Calixto. “When an epileptic crisis appears in the movies or in the series, it is always someone with convulsions on the ground and foaming at the mouth,” she 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 levels in Spain (32%).

Marina, daughter of Anna, is one of these people. She just turned 21 years old. She studies a higher degree in dietetics and nutrition, and nothing differs in appearance from any young person her age. But she has a 65% disability due to epilepsy that she was diagnosed with at two and a half years of age. “One day she fell backwards in the nursery and they told me, another day the same thing happened to her at the house of some relatives and another at home. We took her to the emergency room and she passed him in front of the pediatrician. There was no doubt, ”explains her mother. It is drug-resistant epilepsy, the worst type, which represents between 30% and 40% of cases. “We can ameliorate her crisis, but not completely control it. They have to live with the crises and with the social problem that they cause; rejected, discriminated against…”, points out the neurologist.

“It is an invisible disease, like diabetes or some heart diseases, but unlike these it is not accepted,” laments Calixto. “At school, the classmate who suddenly falls to the ground is already the different one, he is already the designated one, the easy target for everything,” Calixto explains, and expands the accusation: “Marina has received many attacks from teachers. Most have understood, but others have called me saying that my daughter was teasing them, that she was sleeping, when what happened is that she had many seizures at night, she did not sleep well and she forgot what she had studied… When When she was a nursing assistant, they even told her why she was studying, if having epilepsy she would never be able to work… The colleagues did not invite her to their birthdays, in case she had a crisis and the parents did not know what do”.

In the face of rejection, the natural response has historically consisted of hiding the problem, which has only increased ignorance and, consequently, the stigma and comorbidities associated with it. Now those affected raise their voices. Specialists recommend that parents or children present their problem in the classroom, before teachers and classmates. “We have to talk about epilepsy because the more knowledge people have, the less fear it will be to integrate people with epilepsy 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 the family and with the teachers”, ditch Anna Calixto.