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Vol. LlX, No. 6
March 23, 2007

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NINDS Grantee Birbeck Studies Epilepsy in Africa

Dr. Gretchen Birbeck  with Esther and Loreen of Malawi.
Dr. Gretchen Birbeck (c) with Esther and Loreen of Malawi.

A typical day for Dr. Gretchen Birbeck may sound familiar to many in medical research. She begins with the "morning report," a daily update on her patients' conditions and issues. Then she evaluates patients, consults with colleagues and even counsels patients and their family members. But her days are anything but typical. A neuroepidemiologist and NINDS grantee, Birbeck spends her days — at least for half a year — in sub-Saharan Africa, specifically Zambia and Malawi, studying epilepsy and tending to patients as part of the Chikankata Epilepsy Care Team.

In one study cofunded by NINDS and the Fogarty International Center, Birbeck and her colleagues at the University of Zambia are examining epilepsy and its social and economic consequences from the perspective of diverse groups. Her grant, "Epilepsy-Associated Stigma in Zambia," resulted from an FIC request for applications.

Zambia has an unusually high prevalence of epilepsy — at least 12 persons per 1,000 are affected.By comparison, the United States has an epilepsy prevalence of 2 persons per 1,000. In addition to the high prevalence, Zambia — and the continent of Africa as a whole — attach a huge social stigma to the disorder. People with epilepsy — who generally rely on traditional healers instead of standard medicine and have limited access to standard medical care — are often misunderstood by their family and the community. Many believe epilepsy is contagious and that seizures are a sign of possession by evil spirits.

As a result, a large part of Birbeck's research involves education to improve social acceptance and access to treatment and to eliminate the stigma. She and her colleagues are designing community-based interventions to improve quality of life for people with epilepsy. The interventions are based on data gleaned from focus groups of adults with epilepsy and parents of children with epilepsy and from interviews with the area's traditional healers.

"Early in my Zambia-based work, the reality that epilepsy-associated stigma may actually cause 1more morbidity than seizures became evident," said Birbeck. "As we tried to deliver care and conduct biomedical studies of seizures, stigma was the 900-pound gorilla in the room that everyone knew was there, but no one bothered addressing. When NIH came forward with a request for applications aimed at studying stigma — well, wow! We recognized that we might be given the opportunity to better understand the mediators and impact of stigma. The possibility of formally assessing this phenomenon and subsequently developing programs to alleviate the negative impact of such stigma grabbed everyone's attention here."

Ask Birbeck how she ended up in Zambia and she will tell you the country sort of chose her. In 1994, as a medical student, she did a rotation at a rural Zambian hospital. "I wanted to see what it was like to deliver medical care without an MRI down the hall," she said. "I've been spending time here regularly ever since."

In fact, she explained that she was even sort of called to work in the field of neurology as well. As an undergraduate at Indiana University studying a pre-med curriculum — which included dissecting starfish and counting fruitfly offspring — Birbeck struggled to maintain enthusiasm for a career in medicine. Then one day she wandered into a neuroscience class in the department of psychology and her life changed. "I was hooked," she said. Neurology was her calling.

Birbeck went on to graduate in 1990 with a degree in chemistry and psychology. She then earned her medical degree in 1994 from the University of Chicago and a master of public health degree in epidemiology in 2000 from UCLA. From 1994 to 1998, she completed a neurology residency at Johns Hopkins Medical Center. After receiving her M.P.H., she spent 2 years as a Robert Wood Johnson clinical scholar at UCLA and then joined the faculty at Michigan State University. She has been dividing her time between the U.S. and Africa since 1994.

Birbeck (third from l) and members of the Chikankata Epilepsy Care Team provide care to people with epilepsy in the community.
Birbeck and members of the Chikankata Epilepsy Care Team provide care to people with epilepsy in the community.

She co-founded the Chikankata Epilepsy Care Team in 2001, after conducting several hospital-based studies that suggested there was a substantial burden of undiagnosed and untreated epilepsy cases in Chikankata, a community in Zambia. Because she did not know how big the burden was, she and her colleagues conducted a door-to-door prevalence study of epilepsy there. "When we started there were 32 people with epilepsy registered from the community," she said. "By the time we finished, there were almost 900 and once we began to expand health care services, even more came out."

The goals of the team — which is made up of two physicians including Birbeck, a clinical officer, a ward auxiliary and two other non-medical staff with expertise in patient advocacy and counseling — are to provide care to people with epilepsy, conduct epilepsy research relevant to the area and assist Zambia in expanding its medical infrastructure to improve neurological care.

Birbeck conducts a community-based follow-up visit in Malawi.
Birbeck conducts a community-based follow-up visit in Malawi.

Birbeck's other research project in Africa is based in Malawi. There she is funded by NINDS to look for a link between cerebral malaria in children and subsequent epilepsy by studying children admitted to the Blantyre Malaria Project (a long-standing NIAID-funded venture focusing on children who die of severe malaria). She and her colleagues are following a group of survivors to determine if cerebral malaria is a risk factor for later epilepsy development. They are also conducting ongoing enrollment for the study.

Birbeck's ultimate goal is to develop acute interventions using neuroprotective agents with antimalarials to reduce the development of epilepsy in survivors of severe malaria. "I'm not a clinical trialist, but I think this is an important goal," she said. "Undoubtedly, we need to improve the lives of people with epilepsy. But wouldn't it be fabulous to prevent the development of epilepsy altogether?"

In addition to her work in Africa, Birbeck also serves as director of, and associate professor in, MSU's International Neurologic and Psychiatric Epidemiology Program, a relatively new venture that studies neurological and psychiatric disorders in developing countries.

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