Photo courtesy of Dr. Hélène Carabin and
Epilepsy could be reduced by improved sanitation and
education, Fogarty-funded researchers have shown.
By Cathy Kristiansen
Three-quarters of people with epilepsy live in the developing world and a major cause is a tapeworm infection transmitted between humans and pigs - known as cysticercosis. Inside humans, the larvae can reach the brain and trigger severe headaches, stroke, hydrocephalus or epilepsy, which occurs in up to 70 percent of those infected.
Researchers investigated the problem in Burkina Faso, with support from Fogarty's brain disorders program and additional funding from the National Institute of Neurological Disorders and Stroke (NINDS). The team, led by Dr. Hélène Carabin at the University of Oklahoma Health Sciences Center, with Dr. Athanase Millogo of the University of Ouagadougou, is testing an educational intervention designed to reduce infection. The materials also included information to counteract the stigma of epilepsy.
"Epilepsy is attributed to evil spirits," Carabin said. "People with it cannot marry or work or share utensils with the family. Often, the family will build them a little hut, not too close. If they believed it is from a natural cause, then modern medicine would be sought, but if blamed on evil spirits, then they seek out spirit doctors."
Before testing their intervention, the researchers gathered pilot data about the prevalence of cysticercosis, measuring antibodies in the blood of pigs and humans in three villages. Concentrations were highest in villages where pigs roamed freely and lowest in predominantly-Muslim areas where pig farming was negligible.
Their main goal was to lock up the pigs. "Initially, we thought we'd focus on better pig management," Carabin said. "But when we talked to people, they said, 'well, this is all nice and good keeping pigs in pens, but there is nothing to feed them. We can barely feed ourselves. They need to find their own food.'"
The team then mulled how to prevent pigs accessing human waste and how to stop environmental contamination from human feces. "The villagers were aware that open defecation could make them sick and latrines would help, but there was a barrier: I don't want to dig the hole," Carabin said.
Photo courtesy of Dr. Hélène Carabin and
Pigs accessing sewage raise the risk of animals becoming
infected and further spreading tapeworms in the environment
and raising the risk in humans of the disease cysticercosis and
Armed with these findings, the team produced educational materials and selected 60 villages for their study. Half were to be controls; in the others, they showed a comic book and a movie by award-winning scriptwriter Noraogo Sawadogo, both conveying the importance of personal hygiene, cooking pork meat well, keeping pigs in pens and restricting animal access to human feces. One of the skits also showed women being empowered to go on "bed strike" until their husbands built latrines. When planning the project, the team sought input from the nonprofit Water and Sanitation for Africa on ways to engage the villagers in identifying suitable steps to improve hygiene practices, such as washing produce and hands and using latrines rather than defecating randomly in the bush.
Preliminary results confirm a very high prevalence of larval infection in pigs; human data are still being analyzed. Carabin, who is on a six-month sabbatical as a Scholar-in-Residence at Fogarty, hopes the intervention successfully changes personal and village hygiene practices, lowers infection rates and ultimately is extended throughout Burkina Faso.
Capacity building has been an integral part of the project, Carabin said, noting her project permitted the training of several scientists from West Africa in epidemiology and lab work. Next, she hopes to study the natural history of the disease, which is poorly understood.
Fogarty's Brain Disorders in the Developing World: Research across the Lifespan program is designed to increase research capacity in low-resource countries and help improve neurological health for millions around the globe.