Mystery disease devastates northern Uganda

Posted on March 6, 2012


PADER DISTRICT, Uganda (Reuters) – Most mornings, Michael Odongkara takes his daughter Nancy Lamwaka outside and ties her ankle to a mango tree.

It’s not something he likes to do. But the disease that gives the 12-year-old violent seizures has so diminished her mental capacity that she no longer talks and often wanders off. Once, she was lost in the bush for three days.

“It hurts me so much to tie my own daughter to a tree … but because I want to save her life, I am forced to. I don’t want her to (get) loose and die in a fire, or walk and get lost in the bushes, or even drown in the nearby swamps,” he said.

Lamwaka suffers from nodding syndrome, a disease of unknown origins and no known cure, which Ugandan authorities estimate affects more than 3,000 children in the country.

Named after its seizure-like episodes of head nodding, the disease, which mostly affects children between five and 15, has killed more than 200 children in Uganda in the past three years. Thousands of children in South Sudan are also sufferers.

As the seizures are often triggered by food, children who have nodding syndrome become undernourished and mentally and physically stunted.

“There is a general effect on their neurological system to the extent that some can be impaired in vision, eating and even mere recognition of their immediate environment,” said Dr. Emmanuel Tenywa, a country advisor in disease control for the World Health Organization (WHO) in Uganda.

As her father watched helplessly from under a nearby tree, Lamwaka cried out and began to convulse. Saliva flowed from her mouth and her whole body shook for a few minutes until she finally went limp in the dust. Lamwaka has had episodes like this up to five times a day for the past eight years, and her health has steadily deteriorated.

“When she was talking she would ask for food,” he said. “These days she just stretches out her hand begging for it.”


Nodding syndrome was first documented in Tanzania as early as 1962. Fifty years later, researchers still don’t know what it is.

“We have a long list of things that are not causing nodding disease. We still don’t have a definitive cause,” said Dr. Scott Dowell, director of the division of global disease detection and emergency response of the Centers for Disease Control (CDC).

Officials from the Atlanta, Georgia-based CDC were in Uganda for nine days in February on the latest of three trips to investigate the disease.

“We have ruled out, through our field studies and our laboratory testing, more than three different hypothesized causes including . . . 18 virus families with hundreds of members,” said Dowell.

It’s a relatively rare situation for the CDC to be in; of 600 outbreaks of illnesses investigated by the organization’s division of global disease detection, just six are unresolved.

Although they have no reason to believe the disease will spread, researchers can never be certain. Dowell cites “slim disease,” which emerged in West Africa in the 1980s and turned out to be the beginnings of AIDs.


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