How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma

Abstract

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.

People with epilepsy still feel stigmatized

“…Felt stigma can be reported by the person with epilepsy themselves (b) Enacted stigma is the occurrence of discrimination solely on the basis of the disease 2 . Enacted stigma is usually discovered by investigating social prejudices against the person with epilepsy 3 . Felt stigma is far more prevalent than enacted stigma and has been shown to be associated with low level of education and knowledge about epilepsy, both in the people with epilepsy feeling stigmatized and in their peers contributing to stigma 2,4,5 …”

“…stigma is usually discovered by investigating social prejudices against the person with epilepsy. 3 Felt stigma is far more prevalent than enacted stigma and has been shown to be associated with low level of education and knowledge about epilepsy, both in the people with epilepsy feeling stigmatized and in their peers contributing to stigma. 2,4,5 Studies have also revealed that stigma affects the quality of life more than clinical variables like seizure types and frequency, and side effects of drugs.…”

Effect of Chronic Administration of 5-(3-chlorophenyl)-4-Hexyl-2,4 -Dihydro-3H-1,2,4-Triazole-3-Thione (TP-315)—A New Anticonvulsant Drug Candidate—On Living Organisms

“…Frequent generalized seizures have numerous medical and social consequences, e.g., increased risk of injuries and fractures, progressive memory disorders, progressive cognitive impairment, and increased risk of mental disorders. The social consequences of drug-resistant epilepsy include social stigmatization, job loss, the costs of treatment of the co-morbidities and complications of epilepsy, and the costs of long-term institutional care [7].…”

The road to a World Health Organization global action plan on epilepsy and other neurological disorders

“…People with epilepsy have been denied employment and education, and they face barriers to marriage, parenthood, and other aspects of social life. 7,8 Mortality is nearly threefold higher in people with epilepsy, compared with the general population. 9,10 Epilepsy ranks third among chronic neurologic diseases in terms of disability-adjusted years of life lost, 11 and sudden unexpected death in epilepsy is second only to stroke in terms of potential years of life lost among chronic neurological conditions.…”

“…They also face discrimination and prejudice as consequences of widespread social stigma. People with epilepsy have been denied employment and education, and they face barriers to marriage, parenthood, and other aspects of social life 7,8 …”