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Epilepsy: the Stigma and Survival

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Epilepsy: the Stigma and Survival
Abstract

People with epilepsy are socially discriminated against on the grounds of wide-spread negative public attitudes, misunderstandings, and defensive behavior. Although few studies have been conducted to explore the experience of stigma in children and adults with epilepsy, it appears that these involved do worry about the problem and that this worry can affect emotional development. Though the most overt examples of discrimination and prejudice have faded with time, epilepsy still receives too little attention, either from the medical community or the public at large.

The word, Epilepsy, originates from the ancient Greek word “epilepsia", meaning seizure. Since the dawn of time, epilepsy has affected millions of people, from beggars to kings (Devinsky, 2002). It’s one of the oldest conditions of the human race with a rich and distinguished history. The earliest references to epilepsy dates back to the first millennium B.C. in Mesopotamia, where epileptic auras, generalized convulsions and other aspects of what these ancient people called “the falling sickness” were thought to be caused by demons possessing the person (Devinsky, 2002). In ancient Egypt, epilepsy was considered a sacred disease that a god had entered the person. From around the 9th century, particularly in German and English-speaking regions, Christians considered Saint Valentine (SV) to be a significant patron saint of the ‘‘falling sickness” (Masia et al, 1999, p27). From the 15th century to the present day, Christian art has portrayed people with epilepsy as attributes in illustrations of Saint Valentine (Masia et al, 1999, p27). According to the Epilepsy Foundation of America (2006), in many countries legislation reflects years of misunderstanding about epilepsy for example: in both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages; in the United Kingdom, a law forbidding people with epilepsy to marry was repealed in 1970; in the United



References: 1. Goffman, Erving. Stigma. Prentice-Hall: Englewood Cliffs, New Jersey, 1963. 2. www.epilepsyfoundation.org 3. Living Well Epilepsy and Other Seizure Disorders by Carl W. Bazil, M.D., Ph.D. Published by Harper Resource, 2004 4. www.eeoc.gov/facts/epilepsy.html Questions and Answers about Epilepsy in the workplace and the American with Disabilities Act, 2004 5. Epilepsy: Patient and Family Guide, 2nd edition, by Orrin Devinsky, MD Published by F.A. Davis Company, 2002 6. Kohn L, Corrigan J, Donaldson M, eds System. Washington D.C.: Committee on Quality of Health Care in America, Institute of Medicine. National Academy Press, 2000. 12. Choi, S.J., Hong, S.B., & Seo, D.W.(2001). Stigma and quality of life in epilepsy. Epilepsia. 41: 98-104.

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