Announcement of a new Chinese name for epilepsy

To the Editors: On 27 June 2010, the Chairman (Mr. Anthony Wu) of the Hospital Authority (HA) of Hong Kong announced the use of a new Chinese name for epilepsy for use under its governance. The HA is an official health organization in Hong Kong that provides services to more than 95% of its population. He officially mandated the use of in all public hospitals in HA. As a result, the official term for epilepsy, to be used in the future in the HA will be this Chinese name. This announcement started a new era and the decision is made to encourage equal opportunity with no discrimination. This announcement has been published in all major local newspapers, and we believe this change will have a significant impact among the Chinese-speaking population. On a wider front, 27 June 2010 will be remembered as an important day in the history of epilepsy. Worldwide, there are more than 500 million people with epilepsy (de Boer, 2002). In Hong Kong, there are between 35,000 and 70,000 people with epilepsy. Apart from the physical suffering and psychological stress associated with epilepsy, persons with epilepsy suffer from inequalities as a result of the old Chinese name for epilepsy . Epilepsy has long been so described in ancient Chinese writing. The disease was mentioned in one of the oldest medicine textbooks in China, which was firstly published more than 2,000 years ago as “Huang Di Nei Jing”. This clearly described epileptic semiology under two terms: dianji and xian . Not surprisingly then the two were eventually joined together as dianxian . Unfortunately after many years, the meaning of the prefix word dian became corrupted and associated with madness. Furthermore, the Chinese name became transformed to have proximity to animals. Subsequent names described the disease as the bizarre movements of goats or pigs . The names of animals suggested links to animals and the word dian carried the strong implication of psychiatric illnesses. The Hong Kong Epilepsy Association has long been trying to rectify the inequality and stress caused by such naming. In 1997, Marion Sum-Suk Fang, Dr. Wing-Man Ko (then Director, Hospital Authority Hong Kong), Dr. Patrick Li, Professor Virginia Wong, and groups of relatives of epilepsy patients first brought this issue into the open and it has continued to be raised. In 2008, Dr. Ko and Ms. Shelly Lai-Kuen Lee, former deputy secretary for Health and Welfare, jointly wrote a letter to Prof. Peter Wolf, President, International League Against Epilepsy; Susanne Lund, President, International Bureau for Epilepsy; and Dr. Shichuo Li, President, China Association Against Epilepsy, with the aim of promoting a revision of the Chinese name for epilepsy. They suggested use of a name called which literally means epilepsy in brain. From 2008–2010, many meetings were held and preparations made in an attempt to promote this change. The various patient and neurologic groups in Hong Kong all then agreed to sanction this new name, which is accurate and value-free and has no linkage with either animals or psychiatric disease. None of the authors has any conflict of interest to disclose. We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.