Stigma and epilepsy: the Chinese perspective

Abstract

In the Chinese language there is no equivalent for the English word stigma; nevertheless, for many years, people with epilepsy in China have suffered from stigma. We suggest that the best Chinese word to use is (meaning "feeling of disgrace because of the condition--epilepsy or other disease"). Since the 1980s, studies on stigma associated with epilepsy have been conducted in China. These studies found that stigma is felt by about 89% of people with epilepsy and by about 76% of their family members. Here we report the results of a survey conducted in 2008 in a population who were treated with phenobarbital in 2002-2004 during the Demonstration Project of the Global Campaign Against Epilepsy (GCAE). The causes and manifestations of stigma in people with epilepsy and recommendations on overcoming the stigma associated with epilepsy are discussed.