What’s in a Name: Changing the Word for Epilepsy

In the January issue of the journal, Epilepsia, Doctors Kim and colleagues from the Department of Pediatrics at the Severance Children’s Hospital at the Yonsei University College of Medicine in Seoul, Korea, describes how the Korean epilepsy community changed the name of epilepsy in that country.

Public misconception of epilepsy had led to significant stigma associated with the condition, causing impaired quality of life for people living with seizures.

Because epilepsy has been considered to be the consequence of “evanescent spiritual forces and even demonic possession,” the Korean epilepsy community changed the Korean name for epilepsy to a different term that roughly translates to cerebral electric disorder.

The goal was by changing the name of the condition they would be able to minimize the stigma and focus more on the control and the condition of the disease. This project been ongoing since June 2007 and completed in June 2011.

The new name, cerebral electric disorder, was chosen because it was a term that satisfied the following criteria:

• it is neutral;
• it implies scientific basis;
• it is easily differentiated from words of resemblance;
• it is easy to use as both a noun and adjective; and
• it is more likely to be acceptable in global epilepsy communities affected by cerebrovascular disease, neuromuscular disorders, and other neurological disorders.

This is an important advocacy project given that the term epilepsy in the English language can also be used pejoratively. This project in Korea lends support and credence to the idea that perhaps English speaking countries need to make a change in terminology as well.