John Libbey Eurotext

How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma Volume 22, numéro 5, October 2020

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Auteurs
1 Institute of Neurology, Facultad de Medicina, Universidad de la República, Uruguay
2 Neurology Department, Cairo University, Cairo, Egypt
3 Department of Paediatrics and Child Health, Makerere University College of Health Sciences, Kampala, Uganda
4 Moscow Research and Clinical Center for Neuropsychiatry of the Healthcare Department, Moscow, Russia
5 Department of Neurology, AIIMS, New Delhi, India
6 Pirogov Russian National Research Medical University, Moscow, Russia
* Correspondence: Alla Guekht Moscow Research and Clinical Center for Neuropsychiatry and Pirogov Russian National Research Medical University, Moscow, Russia 115419 Donskaya, 43. Moscow, Russia

Epilepsy is one of the most prevalent serious neurological diseases. It is unique, being the only severe and disabling neurological disease that is fully treatable in the majority of cases, but on the other hand, associated with stigma, prejudice and discriminatory practices, which negatively impact people's everyday life in important areas, such as access to education, employment, marriage and social integration. For centuries, people with epilepsy (PWE) were stigmatized in all societies, with the consequences of prejudice and discrimination adding to the medical burden of the disease. Myths and misconceptions about this disease still occur, mostly in low-resources settings, however, in many industrialized countries, the knowledge regarding epilepsy is still limited in the population. The stigma is perceived as a negative attribute that is undesirable for the community to which the individual belongs. PWE are intrinsically undervalued, both by themselves (“felt stigma”) and by the others. Actual discrimination by peers and institutions generates what is referred to as “enacted stigma”. Misconceptions, stigma and negative attitudes towards PWE dramatically decrease quality of life, affecting the most sensitive areas, such as marriage, employment and driving. The Resolution 68.28 of the World Health Assembly (2015), the WHO-ILAE-IBE Global Report “Epilepsy: a public health imperative”, advocates for strengthening and implementing national policies and legislation to promote and protect the rights of PWE, reducing misconceptions about epilepsy and improving access to care. Consolidated efforts are required from different organizations, public health managers, healthcare providers, PWE and their families to work together to improve socialization and quality of life of PWE. Educational programs and awareness to support activities among the general population, health service providers and PWE are the best way to reduce all types of stigma and discrimination.

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