Video: CDC Responds to Nodding Disease in Uganda

A team of CDC experts joined the Ministry of Health and of government, nonprofit, and health officials in Uganda to conduct a multifaceted investigation in Kitgum District, northern Uganda. Listen as Epidemic Intelligence Service Officer, Dr. Jennifer Foltz, tells the story about Nodding Disease, a neurologic syndrome which is devastating to afflicted children.

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Transcript

I'm working as an epidemic intelligence service officer in the United States Public Health Service. We do public-health surveillance and alsooutbreak investigations.

Nodding disease mostly affects 5- to 15-year-old children that we saw when we went and visited them in Uganda. It seems that it starts maybe at 5, 6, 7 years old, and then may progressively get worse. It starts off in children. They can be born healthy. Then they start school and can be top of their class, then they have problems. It's reported that they have problems thinking and concentrating in class, and then this head-nodding starts. Then they can have problems concentrating so much that they drop out of school, become physically disabled. they become mentally disabled. We haven't had any reports that anybody's improved and gotten better from this disease, and we have gotten reports that children have passed away from the disease.

Initially, we got the request from the Uganda Ministry of Health back in November 2009. We've put together a team of a pediatric infectious-disease specialist, a pediatrician with nutrition specialty, which is myself, a toxin expert, and a neurologist from CDC U.S. So, we know at least that there's a seizure activity. It looks like a new seizure disorder. So, we have found that out, so that's a major step forward as far as knowing what we're dealing with and looking into treatment and looking into causes.

The thing that impressed me most about the people of Uganda were how receptive they were. People brought their children in for us to examine, to ask questions. When we held focus groups, many people showed up to tell us the stories of what they've lived through and the children they knew that were affected by disease. One mother came up to me and said that it's been a struggle for her, for her children, and her community, because to see her child that was previously healthy turn around and not be able to feed themselves or care for themselves, and this has been quite a struggle for the family, the community, and for everyone involved. But they hope that, through their struggle, that at least it can help us learn about the disease and then carry forward and maybe prevent it in other children.

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