MSU research: Stigma of epilepsy weighs heavy on those in some developing nations

Contact: Gretchen Birbeck: International Neurologic and Psychiatric Epidemiology: (517) 353-8122, birbeck@msu.edu; or Tom Oswald, University Relations: (517) 432-0920, oswald@msu.edu

Feb. 13, 2007

EAST LANSING, Mich. — People with epilepsy, who live in the African nation of Zambia and throughout much of sub-Saharan Africa, tend to have a lower standard of living because of stigma related to the disease, according research conducted by a Michigan State University neurologist.

The study was a joint effort by MSU’s Gretchen Birbeck and colleagues at the University of Zambia. As recently reported in the Lancet Neurology, Zambians who have epilepsy generally have higher rates of hunger and poverty, have less access to drinking water and are more vulnerable to physical abuse than those without the disease.

“Researchers have long suspected that people with epilepsy in sub-Saharan Africa suffer substantially from stigma, social isolation and poverty related to their disease,” said Birbeck, an associate professor and director of MSU’s International Neurologic and Psychiatric Epidemiology Program. “We think this research sheds new light on the full extent of epilepsy-associated stigma and its devastation to people in the region.”

In the Zambian study, 169 people with epilepsy and an equal number of people with a nonstigmatized chronic health condition were interviewed. Those with epilepsy were less likely to be employed, get properly educated or get married. In addition, many suffered a variety of physical injuries related to seizures, in particular, serious burns.

This is because in many parts of the region there is a taboo against touching a person who is having an epileptic seizure. There is some belief that if a person comes in contact with the saliva of someone during a seizure, that person also will develop epilepsy.

“If someone has a seizure and falls into a fire – not an uncommon occurrence in Zambia – sometimes not even family will help,” Birbeck said. “You don’t see minor burns associated with epilepsy; you see terrible burns.”

The findings were particularly distressing for Zambian women with epilepsy, Birbeck said. Nearly 20 percent of those women reported a history of sexual assault as a result of spousal abandonment and social vulnerability.

“Women with epilepsy reported feeling very vulnerable to rape since many had been abandoned by their husbands or their male relative typically charged with their protection,” she said. “As such, they felt that any man who found them alone could assault them without consequence.”

In addition to that trauma, there is also a fear of HIV. In the Zambian population, there is an HIV rate of 25 percent to 29 percent among people ages 15 through 49.

Educating people on the true causes of epilepsy is key to ending the stigma related to the disease, Birbeck said. However, that is often a challenge in developing nations.

“Depending upon the population, we often have to work with people verbally because literacy is quite poor,” she said. “But educational programs incorporating radio, plays, music and even pictorial signs have been effective in other areas of health.”

To view the paper, visit the Web at http://www.thelancet.com/journals/laneur/issue?volume=6&issue=1.

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