DETROIT — A Wayne State University School of Medicine physician and researcher will convene a vital training workshop on childhood epilepsy in sub-Saharan Africa next month.
Harry Chugani, M.D., the Rosalie and Bruce Rosen professor of neurology and chief of pediatric neurology for the School of Medicine and Children’s Hospital of Michigan, has organized “Epilepsy in Children in Developing Countries.” The training will take place Feb. 1-4 in Entebbe, Uganda.
The attendees will be physicians primarily from sub-Saharan countries, with a few from North Africa. Their airfare and accommodations are provided pro bono. The speakers who will present at the workshop — “true volunteers,” as Chugani called them — are paying their own way and for their own accommodations.
“We will teach them about basic diagnosis and treatment of epilepsy in children,” said Chugani, who also serves as director of the Positron Emission Tomography Center for the School of Medicine and Children’s Hospital of Michigan. He will give opening and concluding remarks, as well as a lecture on the role of neuroimaging in epilepsy.
The main hurdle many developing African countries face in epilepsy treatment is the scarcity of medications, especially anticonvulsants, Chugani said. The World Health Organization estimates that as many as 10 million people in Africa have epilepsy. Seventy percent of those patients could lead normal lives if they received proper treatment. The WHO reports that, in a substantial epileptic patient population, the antiepileptic drug phenobarbitone to control seizures could cost as little as $5 per year, per patient. Yet, 80 percent of Africans suffering with epilepsy receive no treatment at all.
Folkloric beliefs, continuing stigma surrounding epilepsy — some cultures believe it to be contagious — and reliance upon traditional healers also impede proper treatment. In his 2005 report, “Epilepsy-associated Stigma in Sub-Saharan Africa: The Social Landscape of a Disease,” Roy Baskind and Gretchen L. Birbeck noted that a door-to-door study conducted in Zambia found that fewer than 4 percent of those with epilepsy had sought modern medical care. All of them, however, had seen traditional healers for their condition.
Epilepsy, left untreated, can lead to other injuries. One report investigated in South Africa found that epileptic seizures occurring near open cooking fires were a leading cause of burns. That study found that 50 percent of adults admitted with burns to one regional hospital also had epilepsy. The scars left by burns can lead to further stigma, discrimination and isolation for those with epilepsy.
In 2000, the WHO, the International League Against Epilepsy, and the International Bureau for Epilepsy convened a meeting in Senegal to confront epilepsy conditions in Africa. The meeting attracted health and social sciences professionals from all over Africa, and resulted in the African Declaration on Epilepsy. That document proclaimed epilepsy a health care priority for the continent and “required” every national government to develop a plan to provide access to trained medical personnel, modern diagnostic equipment, proper medication and education for the general public to combat discrimination against those with the condition.
Chugani, the president of the International Child Neurology Association, made the workshop his presidential project. He is the principal investigator of a National Institutes of Health grant that is helping fund the project. He also raised additional money to support the workshop.