Epilepsy stigma: moving from a global problem to global solutions

Abstract

Stigma and exclusion are common features of epilepsy in both the developed and developing countries and a major contributor to the burden associated with the condition. Reducing the stigma of epilepsy is key to reducing its impact and so improving quality of life. The social consequences of having epilepsy can be enormous, be it that they vary from country to country, based on cultural differences and economic circumstances. The most significant problems people with epilepsy encounter in daily life often are not related to the severity of the condition, but stem from concepts of epilepsy held by the general public. In this paper, I review the history of epilepsy and consider how different historical and cultural understandings of epilepsy have determined the experience of stigma for those affected by it. I consider how this history of stigma impacts on the position of people with epilepsy today, many of whom may still experience serious limitations to their enjoyment of economic, social and cultural rights and have many unmet needs in the areas of civil rights, education, employment, residential and community services, and access to appropriate health care. Finally, I will discuss some current initiatives aimed at addressed the issue of epilepsy stigma worldwide, which offer hope of an end to the social exclusion and prejudice which people with epilepsy have endured for so long.