SEIN, Epilepsy Institute of The Netherlands, Netherlands.
Seizure. 2010 Dec;19(10):630-6. doi: 10.1016/j.seizure.2010.10.017. Epub 2010 Nov 13.
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.
在发达国家和发展中国家,癫痫都普遍存在污名化和排斥现象,这是与癫痫相关的负担的主要原因之一。减少癫痫的污名化是减轻其影响并改善生活质量的关键。癫痫患者可能会承受巨大的社会后果,这因国家而异,取决于文化差异和经济状况。癫痫患者在日常生活中遇到的最严重的问题通常与病情的严重程度无关,而是源于公众对癫痫的看法。在本文中,我回顾了癫痫的历史,并探讨了不同的历史和文化对癫痫的理解如何决定了受其影响的人的污名化经历。我考虑了这种污名化的历史如何影响今天癫痫患者的地位,他们中的许多人可能仍然在享受经济、社会和文化权利方面受到严重限制,并且在公民权利、教育、就业、居住和社区服务以及获得适当医疗保健方面有许多未满足的需求。最后,我将讨论一些旨在解决全球癫痫污名问题的当前举措,这些举措为结束癫痫患者长期以来所遭受的社会排斥和偏见带来了希望。