Changing Name of Epilepsy in Korea; Cerebroelectric Disorder (noi-jeon-jeung,,): My Epilepsy Story.

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1 Current Literature In Clinical Science Sticks and Stones Changing Name of Epilepsy in Korea; Cerebroelectric Disorder (noi-jeon-jeung,,): My Epilepsy Story. Kim HD, Kang HC, Lee SA, Huh K, Lee BI. Epilepsia 2014;55: Public misconception of epilepsy may lead to significant stigma to the disease itself, thereby causing impaired quality of life in people with epilepsy. Traditionally, epilepsy has been considered to be the consequence of evanescent spiritual forces, and even demonic possession (in many countries). The names of epilepsy in some East Asian countries originated from China, and include madness in their meaning. We recently changed the Korean name of epilepsy, gan-jil ( : a crazy, convulsive disease having meaning similar to), to a neutral and scientifically explainable name: noi-jeonjeung ( ; cerebroelectric disorder). We expect that changing the stigmatized name of epilepsy to a neutral and scientific term with the meaning of cerebroelectric disorder will reduce the social stigma by understanding of epilepsy as one of the neurologic disorders. Commentary Sticks and stones may break my bones but words will never harm me. It s interesting that such an innocent nursery rhyme can completely get it so wrong. In the field of medicine certain words can be much more damaging than the condition itself. Sadly, epilepsy is a prime example. Most epileptologists and neurologists often observe that when they diagnose someone with new onset epilepsy by how that individual and their family is left feeling uncomfortable every time the word epilepsy is uttered. Many patients prefer to describe their condition as a seizure disorder rather than be labeled as epileptic (1). Therefore, it is of particular interest that in the January 2014 issue of the journal Epilepsia Kim and colleagues (2), representing a number of institutions in the Republic of Korea, report their story of changing the name of epilepsy in Korea. Kim and colleagues (2) recount a fairly detailed process beginning in the year 2007 and culminating with the publication of their paper of the difficulty and struggle to get the word changed. For years, the Korean language represented epilepsy and seizures with characters connoting psychiatric conditions roughly translating to madness, or associated with animal diseases, such as mad pig disease. The Korean term for epilepsy represented temporary demonic possession (2). Korean neurologists appropriately noted that this particular choice of word does not reflect the modern scientific understanding of epilepsy as we know it, and more importantly suffocates the afflicted and their families with a toxic stigma. Thus, the Korean name of epilepsy was changed to a more neutral term that conveys a cerebroelectric disorder. Epilepsy Currents, Vol. 14, No. 5 (September/October) 2014 pp American Epilepsy Society In the United States, tagging someone with epilepsy can effectively shun the person by setting up legal barriers to employment, education, driving, insurance, and sports. Major public health organizations like the U.S. Centers for Disease Control and Prevention recognize stigma as a major public health issue (3). The stigma of using the word epilepsy was addressed by the Institute of Medicine (IOM) report on the public health dimensions of epilepsy by noting the confusing nature of epilepsy-related terminology. Historically, in the United States, terms to describe the disorder have included the sacred disease, or falling sickness (1). More recently, terms such as fits and spells have been used to describe epileptic seizures. The problem is that epilepsy is actually a spectrum of disorders that can range from benign to severe, yet the terms commonly used to communicate this condition do not convey the possible nuances of epilepsy, nor do they take on the issue of seizure in its own right. Epileptologists have moved away from the use of the term epileptics toward the phrase people with epilepsy, just like other general terms like the disabled, the elderly, and the homeless have been replaced with phrases like people with disabilities, older adults, and homeless individuals (1). Clearly, the term epileptic has a pejorative connotation and it was an official recommendation by the IOM that the term epileptic should be discontinued. The committee suggested using more precise and less negative terms, such as seizure medications to replace antiepileptic drugs, epilepsy seizures to replace epileptic seizures, and seizure-like events with a psychological basis rather than psychogenic nonepileptic seizures. The point is that these old terms harm our patients. The stigma that these names convey is neither unique to epilepsy nor new. Ancient scourges including leprosy, plague, and syphilis to modern maladies like AIDS, psychiatric illnesses, colorectal cancer, to name a few, all share common bonds enshrouded in needless shame. It s as though we are 257

2 What s in the Name of Epilepsy naturally conditioned to think in terms of us or them, ignoring the fact that everybody s got something to hide. It s ironic that in this age of instant information misinformation still runs rampant and it all begins with a name. This study by the Koreans conveys two important points. 1) it is difficult and time-consuming to make changes in nomenclature for a condition that is already well known to so many, and 2) it is essential to make an investment in changing the names of a condition in order to relieve the psychosocial consequences of the illness. Just like AIDS gave way to HIV, and cancer gave way to specific subtypes of the individual neoplasms, epilepsy terminology will need to evolve in this manner. Fundamentally, every physician really has to be careful with his or her words. The best doctors are really great editors. They use the right phrase, right moment, are always honest, while immunizing their patients with the right choice of words. Seizure disorder sounds a lot better than using the word epileptic or epileptic disorder. We should follow the example of the Koreans and proceed with making our own adjustments to the English language to help our patients. by Joseph I. Sirven, MD References 1. Committee of the Public Health Dimensions of the Epilepsies. Epilepsy Across the Spectrum. National Academies Press: Washington, DC; Kim HD, Kang HC, Kang HC, Lee SA, Huh K. Lee B. Changing name of Epilepsy in Korea; cerebroelectric disorder: my epilepsy story. Epilepsia 2014;55: US Centers for Disease Control and Prevention. mentalhealth/about_us/stigma-illness.htm. Accessed 5/1/

3 American Epilepsy Society Epilepsy Currents Journal Disclosure of Potential Conflicts of Interest Instructions The purpose of this form is to provide readers of your manuscript with information about your other interests that could influence how they receive and understand your work. Each author should submit a separate form and is responsible for the accuracy and completeness of the submitted information. The form is in four parts. 1. Identifying information. Enter your full name. If you are NOT the main contributing author, please check the box no and enter the name of the main contributing author in the space that appears. Provide the requested manuscript information. 2. The work under consideration for publication. This section asks for information about the work that you have submitted for publication. The time frame for this reporting is that of the work itself, from the initial conception and planning to the present. The requested information is about resources that you received, either directly or indirectly (via your institution), to enable you to complete the work. Checking No means that you did the work without receiving any financial support from any third party that is, the work was supported by funds from the same institution that pays your salary and that institution did not receive third-party funds with which to pay you. If you or your institution received funds from a third party to support the work, such as a government granting agency, charitable foundation or commercial sponsor, check Yes. Then complete the appropriate boxes to indicate the type of support and whether the payment went to you, or to your institution, or both. 3. Relevant financial activities outside the submitted work. This section asks about your financial relationships with entities in the bio-medical arena that could be perceived to influence, or that give the appearance of potentially influencing, what you wrote in the submitted work. For example, if your article is about testing an epidermal growth factor receptor (DGFR) antagonist in lung cancer, you should report all associations with entities pursuing diagnostic or therapeutic strategies in cancer in general, not just in the area of EGFR or lung cancer. Report all sources of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36 months prior to submission of the work. This should include all monies from sources with relevance to the submitted work, not just monies from the entity that sponsored the research. Please note that your interactions with the work s sponsor that are outside the submitted work should also be listed here. If there is any question, it is usually better to disclose a relationship than not to do so. For grants you have received for work outside the submitted work, you should disclose support ONLY from entities that could be perceived to be affected financially by the published work, such as drug companies, or foundations supported by entities that could be perceived to have a financial stake in the outcome. Public funding sources, such as government agencies, charitable foundations or academic institutions, need not be disclosed. For example, if a government agency sponsored a study in which you have been involved and drugs were provided by a pharmaceutical company, you need only list the pharmaceutical company. 4. Other relationships Use this section to report other relationships or activities that readers could perceive to have influenced, or that give the appearance of potentially influencing, what you wrote in the submitted work.

4 American Epilepsy Society Epilepsy Currents Journal Disclosure of Potential Conflicts of Interest Section #1 Identifying Information 1. Today s Date: 8/21/ First Name Joseph Last Name Sirven Degree MD 3. Are you the Main Assigned Author? Yes No If no, enter your name as co-author: 4. Manuscript/Article Title: Sticks and Stones 5. Journal Issue you are submitting for: Epilepsy Currents Section #2 The Work Under Consideration for Publication Did you or your institution at any time receive payment or services from a third party for any aspect of the submitted work (including but not limited to grants, data monitoring board, study design, manuscript preparation, statistical analysis, etc.)? Complete each row by checking No or providing the requested information. If you have more than one relationship just add rows to this table. Type No Money Paid to You Money to Your Institution* Name of Entity Comments** 1. Grant e 2. Consulting fee or honorarium 3. Support for travel to meetings for the study or other purposes 4. Fees for participating in review activities such as data monitoring boards, statistical analysis, end point committees, and the like 5. Payment for writing or reviewing the manuscript 6. Provision of writing assistance, medicines, equipment, or administrative support. 7. Other * This means money that your institution received for your efforts on this study. ** Use this section to provide any needed explanation. Page 2 10/17/2014

5 Section #3 Relevant financial activities outside the submitted work. Place a check in the appropriate boxes in the table to indicate whether you have financial relationships (regardless of amount of compensation) with entities as described in the instructions. Use one line for each entity; add as many lines as you need by clicking the Add box. You should report relationships that were present during the 36 months prior to submission. Complete each row by checking No or providing the requested information. If you have more than one relationship just add rows to this table. Type of relationship (in alphabetical order) No Name of Entity Comments** 1. Board membership Money Paid to You Money to Your Institution* 2. Consultancy >1.00 Upsher- Smith 3. Employment 4. Expert testimony 5. Grants/grants pending >1.00 Eisai, Neuropace 6. Payment for lectures including service on speakers bureaus 7. Payment for manuscript preparation. 8. Patents (planned, pending or issued) 9. Royalties 10. Payment for development of educational presentations >1.00 Medscape 11. Stock/stock options 12. Travel/accommodations/meeti ng expenses unrelated to activities listed.** 13. Other (err on the side of full disclosure) * This means money that your institution received for your efforts. ** For example, if you report a consultancy above there is no need to report travel related to that consultancy on this line. Section #4 Other relationships Are there other relationships or activities that readers could perceive to have influenced, or that give the appearance of potentially influencing, what you wrote in the submitted work? No other relationships/conditions/circumstances that present a potential conflict of interest. Yes, the following relationships/conditions/circumstances are present: Thank you for your assistance. Epilepsy Currents Editorial Board Page 3 10/17/2014