ILAE-IBE Joint Statement on International Epilepsy Day 2023

Today, on International Epilepsy Day, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) are calling for greater understanding and intersectoral action to tackle the stigma and discrimination faced by people with epilepsy worldwide.    

“More than 50 million people around the world live with epilepsy,” said Dr Francesca Sofia, IBE President. “For many of these people, the stigma attached to epilepsy is often more difficult to deal with than the disease itself.

“Stigma, fueled by fear and misconceptions, takes many forms and can be present in the family, community, school, clinic, and workplace. As a result, people with epilepsy may not seek the help they need and are at real risk of social exclusion. This can create a major economic burden and have a negative impact on mental wellbeing and overall quality of life.”

Addressing stigma and discrimination is a key component of the World Health Organization (WHO) Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders. The plan was unanimously adopted by the 194 WHO Member States in May 2022.

“Epilepsy has significant personal, health, economic and social inclusion consequences for people living with the disorder and for their families and communities, the response should not be anything less than integrated, comprehensive and engaging all of society,” said Dr Dévora Kestel, WHO Director for Mental Health and Substance Use.

The Intersectoral Global Action Plan calls for 80% of countries to have developed or updated their legislation to promote and protect the rights of people with epilepsy by 2031.

Examples of good practice that can support governments, NGOs, and communities in reducing stigma and changing discriminatory legislation can be found in the WHO’s Improving the Lives of People with Epilepsy: A Technical Brief (December 2022).

IBE completed a detailed mapping of health laws related to epilepsy in Africa, with work now ongoing in other regions. The IBE’s Advocate’s Toolkit for Reducing Epilepsy Stigma in Africa provides a useful resource for policy makers and advocates seeking to change legislation and attitudes.

“In virtually every corner of the world, epilepsy is misunderstood. Epilepsy is treatable and people with epilepsy can live full lives” said Prof. Helen Cross, ILAE president. “International Epilepsy Day allows us to come together, to stand up against stigma and discrimination, and to build a world where no person’s life is limited by epilepsy and the harmful myths that surround it.”

 

 

Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.

Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.

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