A Returning Doctor and a Mysterious Disease

A Returning Doctor and a Mysterious Disease

Discovering MSH blog series graphicOver the next couple of months, as MSH celebrates it's 40th anniversary, reporter John Donnelly and photographer Dominic Chavez will be traveling to several countries to report on MSH’s work in the field. The stories will go into a book due out in the fall on MSH’s 40 years in global health. This blog entry is a post from the road, to give a flavor of their experiences with MSH staff.

More than 70 children and young adults infected with nodding disease listen to village leaders in Witto Payam, South Sudan. © Dominic Chavez

I’m just back from an incredibly bumpy ride---sitting on a back bench in a 4 x 4 vehicle to West Mundri, South Sudan, eight hours out of and back to Juba. I traveled with Dr. Victor Guma, Primary Health Care Advisor for MSH, who had moved back to Juba in February with his wife and three-year-old boy from Great Britain (where he earned his Master’s degree in public health from Oxford). Guma’s return is part of the reverse brain drain now going on in South Sudan as professionals living elsewhere are feeling the pull to return home. Guma, 36, was born 200 miles west of Juba, in a village on the border with the Democratic Republic of Congo. His father, who died just two weeks ago, was in agriculture, working for the government, nongovernmental organizations, and eventually became a member of the parliament. His mother was a medical doctor, and the couple raised their seven children in Juba. Guma received his medical degree in Khartoum, where he also became active in peace-building activities among young people. He went to the UK, he said, “to build myself. I went there to get something to bring something back to here.” He could have stayed in the UK, but “I would be one of many there. In South Sudan I could leave footprints. I want my life to be meaningful.”

We traveled to talk to people about a disease for which there is no cure nor no known cause. It’s called nodding disease. We stopped in Witto Payam, on the way to West Mundri, to talk to villagers. Both of us were a bit stunned to see what greeted us: more than 70 children and a couple dozen adults waiting in the shade of mango trees for us. Nearly all the children had contracted the disease. The disease was given its name because those infected start nodding at the sight of food, so much so that they cannot eat. The disease greatly diminishes the mental capacity of those who suddenly contract it, and it can cause epileptic-like fits or convulsions. In Witto Payam, I talked with an elder, Robert Ariamba Michael, about the impact of the disease on his village. “We have lost hope with these children,” he said. “Some died, but even those who live we don’t expect anything from them.” I asked him how it has affected his life. “I have eight children,” he said. “Five of them have this disease.” He said no one in the villages around them really knew what caused the disease. In Witto Payam and neighboring Jambo, more than 70 children and young adults, from a year or two old to 25 years old, had the disease, and other similar cases have been reported in neighboring counties and in northern Uganda. Some researchers have speculated that it could be connected with river blindness as many of the affected children also contracted it. “I cannot reach any sure conclusion on why we have this disease,” Ariamba said, “so I conclude that it’s a punishment for God.” We left and didn’t talk for a while afterward. Later, we stopped in a health center and talked to women who had recently started using modern contraceptives in large part because of MSH’s training of health workers that included outreach for family planning. On the way back to Juba, Guma was thinking about nodding disease. “I didn’t know the scale of it at all,” he said. “We need to take more time to talk with people and then establish serious research to learn what causes it. It’s so serious.” With that, he turned quiet. Two months back home, Guma had a lot to think about.

John Donnelly is a journalist based in Washington, D.C., specializing in global health and environmental subjects. From 1999 to early 2008, he was a reporter with The Boston Globe. He worked for five years in the Washington bureau of The Globe, covering foreign policy, with a special focus on global health issues. From 2003 to mid-2006, he opened and ran the Globe’s first-ever Africa bureau. Based in South Africa, he traveled widely around the continent, focusing on a wide range of health issues.