Home » Epilepsy, two campaigns in schools and cities to stop being afraid of it – breaking latest news

Epilepsy, two campaigns in schools and cities to stop being afraid of it – breaking latest news

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Epilepsy, two campaigns in schools and cities to stop being afraid of it – breaking latest news

by Elena Meli

The lack of knowledge of the disease fuels prejudices, which make life difficult especially for young people: two campaigns by the high school provide education, in schools and in meeting places in the city

Don’t be afraid of epilepsy anymore by talking about it more and more to young people in schools, to the entire population in the cities. And not only on the occasion of International Epilepsy Day on 12 February, when the Colosseum was lit up in purple, the color that recalls this neurological disease: to break down prejudices and make everyone truly aware of the pathology, so as not to fear it anymore , two campaigns of the Lice Foundation have just started (Italian League against Epilepsy) destined to last in the months and years to come.

Epilepsy at the cinema

The first of the two initiatives, «Epilepsy at the cinema: tales of real stories», includes meetings with schools and matinees at the cinema for the screening of the short film «Out of water», presented last year at the Giffoni Film Festival and at the Cinema di Venezia, and the docufilm «Dissonanze», which recounts the experiences of two young adults with epilepsy. The meetings, which will be held in ten cities throughout Italy in February and March, will be an opportunity to talk to young people about epilepsy, to educate and to break down some of the stigma surrounding the disease and which, as he explains Lice president Laura Tassi, «depends on the lack of knowledge of epilepsy, which is still scary because we don’t know what it is or how to deal with it. Epilepsy is a chronic disease with a strong, inevitable impact on daily life and relationships with people, classmates and friends.” The short film, based on the true story of a boy, tells it well, and the language of cinema and the emotions it arouses can be a privileged means to better understand and welcome those who suffer from epilepsy.

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Epilepsy at school

Also because they are often young people: epilepsy affects 1 percent of the population and the onset is in the majority of cases in childhood and adolescence, although cases of onset in the over 75s following cardiovascular events are increasing or other central nervous system problems. Also for this reason, since 2016, for example, Lice has collaborated with the Bambino Gesù Hospital on the “School is not afraid of crises” project, with which over the years 6 thousand teachers have been trained so that they know how to manage an epileptic attack in the classroom: 90 percent of crises last less than two minutes and resolve without medical intervention. If it lasts longer, the timely and correct administration of specific drugs can interrupt the crisis and avoid hospitalization. From the start of the project to today, hundreds of attacks have been recorded in participating schools, but thanks to the knowledge and skills acquired they have been managed well and improper access to the emergency room has been eliminated.

Benches in the cities

Knowing means not being afraid, which is why Lice’s second campaign for 2024 is aimed at all citizens and will continue for years: with “Put epilepsy on the bench” many purple benches, designed and built with Fondazione Big Bench Community Project by Christopher Bangle, will be placed in parks, hospitals and other public places in numerous cities throughout Italy, from North to South. These purple benches will be a way to talk to everyone about epilepsy and are places where it is possible to sit and be together: the bench specifically designed for the initiative is a “love bench” in which three benches alternate to ensure that whoever sits on one can see the face of whoever is sitting on the other: a way to also symbolize the fact that the people with epilepsy should not be left alone, but we must sit next to them. As Oriano Mecarelli, past president of Lice, explains, «the purple benches will be a lasting testimony to the fact that epilepsy is a disease with a great impact on a social level, but little known and a source of discrimination. It will be nice to sit on our benches to encourage the inclusion of people with epilepsy and the claim “Put epilepsy on the bench” also has a particular metaphorical meaning: let’s make sure we can defeat the disease and the stigma it entails.”

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The hope is that in the future the percentage of people who feel penalized by the disease will decrease: today, according to a survey by the Italian Epilepsy Federation presented on the occasion of World Day, 40 percent of people with epilepsy evaluate their state of epilepsy negatively. health and one in two believes that the disease greatly interferes with their daily life, especially at work and in the possibility of planning a future or managing free time. 61 percent feel “different” in social life and in relationships with others, many give up playing sports for fear of crises; furthermore, one in three states that illness-related expenses exceed 30 percent of the overall family budget. A burden that should be lightened, rights that should be guaranteed: also for this reason, in line with the directives of the Global Intersectoral Action Plan for Epilepsy and Other Neurological Disorders (IGAP), ratified in 2022 by the World Health Organization healthcare, by 2031 Italy will have to adopt specific legislation on epilepsy. There are four bills in the Senate, two in the Chamber and the hope is that a synthesis will be reached soon, because as Francesca Sofia, president of the International Bureau for Epilepsy, concludes, «the objective is to protect the human rights of people with epilepsy. The main barrier is the high level of ignorance and prejudice about epilepsy, a lack of knowledge that results in stigma and social exclusion at all levels, in school, the workplace and in the community, and which also results in inadequate levels of care and assistance, wrong diagnoses and therapies. All this can only change if the needs of people with epilepsy are recognized within specific public policies and programmes.”

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February 15, 2024 (changed February 15, 2024 | 07:08)

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