According to the reports of the World Health Organisation, there are around 50 million people with epilepsy (PWE) in the world, including 40 million patients in the developing countries. Of these people, 60-90% do not receive medical treatment or regular treatment. There are around 9 million PWE in China, including 6 million people with active epilepsy. Moreover, there is an addition of 0.4 million new cases each year in the nation. A survey suggests that nearly 65% of these patients do not receive appropriate medical treatment. Furthermore, due to the lack of relevant knowledge and under the influence of traditional custom or superstitious ideas, many PWE not only suffer from the condition, but also endure social pressure. They receive unfair treatment or even discrimination in respect of employment, education and marriage. Therefore, epilepsy is not only a disease, but also an issue of public health and a social problem.

Death caused by epilepsy is a major concern of epileptologists, public health workers, and PWE’s families. Unfortunately in most countries epilepsy is not listed in “cause of death” statistics as an independent disease. Deaths of persons with epilepsy are almost always registered as caused by the underlying disease or other cause, such as ‘accident’. So, mortality of epilepsy usually does not have a valid statistical basis. Reports from China showed mortality for epilepsy was 7.9/100,000/yr in urban area and 6.9/100,000/yr in rural area (WHO 2004).

Research and data on SUDEP, the cause of which remains poorly understood, are very rare in China. From 1994 to 2004, only three papers on this topic were published, and two of them were literature review. Wang XF and colleagues (2004) analyzed the clinical and pathological information of seven SUDEP cases. They found all the seven cases had oedema of brain and lung. Some of the patients had a reduction of neurones and an increase of gliocytes. No neoplasms or injuries to the brain were found. All seven died when they had general tonic clonic seizures; two in sleep. Four had agitation or fright before death.

One hundred and twenty epileptic patients who had been under an extended test for ‘Community Control of Epilepsy’ in the late 1980’s in two provinces in China were followed up five years after the test. Thirteen had died during the five years. The mortality rate of this group was 2.2% per year and around 3.4 times higher than the rate in general population. Among the thirteen deceased, two (15.4%) might be categorized as SUDEP. This might be the only epidemiological information for SUDEP in China (Wang et al. 1993).

The China Association Against Epilepsy (CAAE) has just been established in the People’s Republic of China. CAAE is a nationwide professional and social organisation. The establishment of CAAE is of great significance for promoting scientific and normative treatment of the 9 million PWE in the country, rectifying the social discrimination and prejudice against them, and safeguarding their lawful rights and interests.

CAAE aims to promote improved medical treatment and scientific research and education on epilepsy, and to enhance international cooperation through participation in relevant international organisations on behalf of the Chinese epilepsy community.

It is a milestone in the development of prevention and control of epilepsy in China. We also expect to focus more attention on SUDEP in China in the future under the coordination of CAAE.

Shichuo Li,
China Association AgainstEpilepsy
Yongqing Zhao, Epilepsy Centre, Beijing Tiantan Hospital

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.