International Epilepsy Day, more rights for patients

International Epilepsy Day, more rights for patients

Established in 2015, International Epilepsy Day, which this year is celebrated on 12 February, it aims to give visibility to the history and experiences of those who suffer from this pathology, but also to promote increasingly effective and inclusive treatment strategies for patients in Worldwide. The two global objectives reported on the page dedicated to the international day are in fact to increase the coverage of services dedicated to people affected by this pathology by 50% by 2031, and to promote at an international level the development and updating of laws aimed at protect the rights of patients.

The numbers of epilepsy

Epilepsy is a chronic pathology that affects the central nervous system, and can affect people of any age. According to WHO data, around 50 million people in the world are affected by this disease, which is the most widespread neurological disorder on a global scale. Approximately 75% of people suffering from epilepsy live in developing countries and do not receive the necessary care, as well as being victims of stigma and discrimination.

The fact that the incidence is higher in middle- and low-income countries is probably due to a combination of factors, including poor access to prevention programs, the higher incidence of injuries due to road accidents or related to childbirth. The onset of epilepsy, in fact, can be linked to severe brain trauma, brain damage caused by lack of oxygen during childbirth, congenital anomalies associated with brain malformations, infections that affect the central nervous system such as meningitis or encephalitis . Approximately 25% of epilepsy cases are considered potentially preventable.

Symptoms and treatments

And even when the disease is present, WHO estimates indicate that in approximately 70% of cases it is possible to live without epileptic seizures, provided you receive a timely diagnosis and adequate treatment. However, in low- or middle-income countries, the average public availability of generic antiepileptic drugs is less than 50%.

Furthermore, most of the causes of death linked to this pathology – the risk of premature death is approximately three times higher in those suffering from epilepsy, especially for those living in middle- or low-income countries or in rural areas – are potentially preventable.

The characteristics of epileptic seizures vary based on the area and size of the part of the brain from which the first disorders originate. Symptoms, such as loss of consciousness and movement disorders, can be temporary or more prolonged. Furthermore, people with epilepsy more often experience psychological conditions such as anxiety and depression.

The campaigns of the Italian League against Epilepsy

“Epilepsy at the cinema: telling real stories. Meetings with schools” and “Put Epilepsy on the bench” are the two awareness campaigns organized on the occasion of the international day by the Italian League against Epilepsy (LICE) and the LICE Foundation.
The first is dedicated in particular to secondary school students, who will have the opportunity to participate in matinees in cinemas in ten cities spread across the national territory. During the events, organized in collaboration with the National Association of Cinema Exhibitors (ANEC), students and teachers will attend the screening of “Fuori dall’acqua”, the short film based on the story of a boy with epilepsy (here is the trailer), and the LICE docufilm “Dissonanze”, which tells the life experience of two young adults affected by this pathology.

“Put Epilepsy on the Bench” was created with the aim of placing purple benches, the color of the fight against the disease, in local gardens, parks, avenues and inside hospitals in the main Italian cities. Furthermore, LICE will create, with the Big Bench Community Project Foundation, a purple bench designed specifically by the American designer Christopher Edward Bangle.

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