Friday, June 15, 2018

Changing the Name to Combat Epilepsy Stigma


We have come a long way in understanding and treating epilepsy. However, there is still a terrible stigma surrounding it, in some countries more than others. The word epilepsy comes from the Greek word meaning to seize. It was considered a “sacred disease,” one with a lot of mystery and was related to religion and spirituality and witchcraft. Although we now know all this to be false, the stigma of epilepsy unfortunately endures.

In many Asian languages, the root of the word for epilepsy has the connotation of (crazy) “madness.” It is based on the Chinese word for epilepsy from the 8th century under two terms which were put together: diani and xian, to make dian-xian. Early on, the meaning of the first part (dian) became associated with madness and psychiatric problems. It also was linked with diseased animals, especially pigs. It is probably because of the language of epilepsy that about 25-57% of Asians consider it a psychiatric problem.

I came across an effort to combat this in South Korea which started in 2009 and resulted in action in 2011. At first, I thought it was strange, but I think it’s good. It was a campaign to rename the Korean word for epilepsy (gan-jil [간질]), literally, “crazy, convulsive madness.” The members of the Korean Epilepsy Society and Korean Epilepsy Association put forth a neutral, medical term to replace it: noi-jeon-jeung (뇌전증), which means cerebroelectric disorder. The name is good since it doesn’t carry all the baggage and stigma of gan-jil. Also, it is a word that can be used by physicians worldwide without fear of being misunderstood. You can read the full report here.

This action has been praised by the epilepsy community (http://epilepsycurrents.org/doi/pdf/10.5698/1535-7597-14.5.257?code=amep-sitehttps://psychopathology.imedpub.com/trends-in-renaming-the-korean-terms-for-psychiatry-schizophrenia-and-epilepsy.pdf). Other countries may follow their lead, and in doing so, I believe the stigma will slowly dissipate. Of course, it will take time. That is why we continue to work to spread awareness.


References
KimHeung Dong,  et al. “Changing the Name of Epilepsy in Korea: cerebroelectric disorder (noi-jeon-jeung).”
Epilepsia, Vol.55, No.3 (March 2014), pp.384-386.

Sirven, Joseph. “What’s in the Name of Epilepsy? Sticks and Stones.”
Epilepsy Currents, Vol. 14, No. 5 (September/October 2014), pp. 257–258.

Park, Seon-Cheol. “Trends in Renaming the Korean Terms for Psychiatry, Schizophrenia, and Epilepsy.”
Acta Psychopathologica, Vol.2, No.3:26 (2016), pp.1-2.

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