Address correspondence to Gretchen L. Birbeck, 324 West Fee Hall, East Lansing, MI 48824. E-mail:
Authors’ addresses: Gretchen L. Birbeck, Michigan State University’s International Neurologic and Psychiatric Epidemiology Program, 324 West Fee Hall, East Lansing, MI 48824, Tel: 517-353-8122, Fax: 517-432-9414, E-mail:
Acknowledgments: We thank the Epilepsy Association of Zambia and the Chikankata Epilepsy Care Team for logistic support and the women who participated in the focus group discussions and were so open in their exchanges.
Financial support: This work was supported by NIH Grants NS48060 and NS46086. During this work, GB also received support as a Charles E. Culpeper Medical Scholar through the Goldman Philanthropic Partnerships.
Aziz H, Akhtar SW, Hasan KZ, 1997. Epilepsy in Pakistan: stigma and psychosocial problems. A population-based epidemiologic study. Epilepsia 38 :1069–1073.
Devinsky O, Westbrook L, Cramer J, Glassman M, Perrine K, Camfield C, 1999. Risk factors for poor health-related quality of life in adolescents with epilepsy. Epilepsia 40 :1715–1720.
Jacoby A, 1994. Felt versus enacted stigma: a concept revisited. Evidence from a study of people with epilepsy in remission. Soc Sci Med 38 :269–274.
Link B, Phelan J, 2001. On Stigma and Its Public Health Implications. Stigma and Global Health: Developing a Research Agenda. Bethesda, MD. Available at: http://www.stigmaconference.nih.gov/LinkPaper.htm. Accessed June 22, 2008.
Diop AG, de Boer HM, Mandlhate C, Prilipko L, Meinardi H, 2003. The global campaign against epilepsy in Africa. Acta Trop 87 :149–159.
Prpic I, Korotaj Z, Vlasic-Cicvaric I, Paucic-Kirincic E, Valerjev A, Tomac V, 2003. Teachers’ opinions about capabilities and behavior of children with epilepsy. Epilepsy Behav 4 :142–145.
Jacoby A, Gorry J, Gamble C, Baker GA, 2004. Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia 45 :1405–1415.
Baskind R, Birbeck GL, 2005. Epilepsy-associated stigma in sub-Saharan Africa: the social landscape of a disease. Epilepsy Behav 7 :68–73.
Diamantopoulos N, Kaleyias J, Tzoufi M, Kotsalis C, 2006. A survey of public awareness, understanding, and attitudes toward epilepsy in Greece. Epilepsia 47 :2154–2164.
Kaiser C, Asaba G, Leichsenring M, Kabagambe G, 1998. High incidence of epilepsy related to onchocerciasis in West Uganda. Epilepsy Res 30 :247–251.
Longe AC, Osuntokun BO, 1989. Prevalence of neurological disorders in Udo, a rural community in southern Nigeria. Trop Geogr Med 41 :36–40.
Osuntokun BO, Adeuja AO, Nottidge VA, Bademosi O, Olumide A, Ige O, Yaria F, Bolis CL, Schoenberg BS, 1987. Prevalence of the epilepsies in Nigerian Africans: a community-based study. Epilepsia 28 :272–279.
Jilek-Aall L, Rwiza HT, 1992. Prognosis of epilepsy in a rural African community: a 30-year follow-up of 164 patients in an outpatient clinic in rural Tanzania. Epilepsia 33 :645–650.
Goffman E, 1963. Notes on the Management of Spoiled Identity. Englewood Cliffs: Penguin, Harmondsworth.
Atadzhanov M, Chomba E, Haworth A, Mbewe E, Birbeck GL, 2006. Knowledge, attitudes, behaviors, and practices regarding epilepsy among Zambian clerics. Epilepsy Behav 9 :83–88.
Birbeck GL, Chomba E, Atadzhanov M, Mbewe E, Haworth A, 2006. Zambian teachers: what do they know about epilepsy and how can we work with them to decrease stigma? Epilepsy Behav 9 :275–280.
Chomba EN, Haworth A, Atadzhanov M, Mbewe E, Birbeck GL, 2007. Zambian health care workers’ knowledge, attitudes, beliefs, and practices regarding epilepsy. Epilepsy Behav 10 :111–119.
Mbewe E, Haworth A, Atadzhanov M, Chomba E, Birbeck GL, 2007. Epilepsy-related knowledge, attitudes, and practices among Zambian police officers. Epilepsy Behav 10 :456–462.
Birbeck G, Chomba E, Atadzhanov M, Mbewe E, Haworth A, 2007. The social and economic impact of epilepsy in Zambia: a cross-sectional study. Lancet Neurol 6 :39–44.
Parker R, Aggleton P, 2003. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med 57 :13–24.