The role of foundations and NGOs in mitigating epilepsy stigma.

Résumé

Epilepsy is a neurological condition characterized by recurring

seizures, affecting an estimated 65 million people worldwide,

the large majority of whom live in low- and middle-income

countries. In these lower-income regions, people with

epilepsy (PWE) frequently face widespread and severe social

stigma that dramatically reduces their quality of life and that

of their households. Because the social consequences can even

exceed the medical, stigma reduction efforts are an essential

part of improving the quality of life for PWE. “Resource organizations"

(such as funding foundations) and “implementors”

(such as epilepsy-focused NGOs) can partner to play a critical

role in helping to increase understanding of epilepsy and

reduce its harmful effects.

Three program implementors in Africa are using general sensitization

and targeted education as primary methods to curb

the effects of stigma. These methods are designed and delivered

according to local context and target group. The implementors

report that much of the stigma problem is rooted in

the common belief that epilepsy has a spiritual cause. A general

lack of understanding of basic medical facts (causes, cures,

etc.) about epilepsy is also widespread. Common methods

used to address the problem include awareness campaigns,

door-to-door outreach, media promotions and printed literature.

However, NGO implementors report scarce resources as

a major limiting factor in their efforts.

As the wider community gains awareness that epilepsy is a

medical condition that can often be successfully treated, healthcare

providers support awareness and education efforts by

helping reduce or eliminate seizures. Any efforts to reduce

stigma should link access to diagnostic and treatment resources

to support effective epilepsy management. Because

efforts around epilepsy in low-income regions are substantially

under-resourced, foundations and other resource organizations

are critically needed to expand the work being done.