Published On: Mon, Mar 12th, 2012

Nodding disease: What’s happening to the children of North Uganda?



The African nation of Uganda certainly has it’s share of problems including war, poverty and disease. However, one disease is literally making parents in certain districts of the north of the country tremble in fear.

The mysterious disease affecting areas of Northern Uganda that many outside the region have never heard of, but what is known as “nodding disease” has killed at least 200 children and caused heartbreaking symptoms in 3000 others.

Imagine children having epileptic-like seizures, repetitive nodding of the head, mental retardation, stunted growth and death, sometimes from secondary accidents like drowning and burns.

Often times the symptoms of the disease can be triggered by the cold weather or food.

Moreover, the things that parents have to do to protect their children are enough to break your heart. A Reuters report Tuesday describes what one father’s story:

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.

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.”

Nancy is one of the “lucky ones”. Other parents, citing difficulties in taking care of their sick children, abandoned them.

When I say it’s mysterious, that wasn’t just directed at laypeople and casual readers of the news, but public health experts both nationally and internationally.

Last month, experts from the US Centers for Disease Control and Prevention (CDC) spent nine days in Uganda to investigate “nodding disease”.  They ruled out a number of potential causes; viral,etc,  however, Dr. Scott Dowell, director of the Division of Global Disease Detection at the CDC pretty much summed it up, “We have a long list of things that are not causing nodding disease. We still don’t have a definitive cause”.

The cause of nodding disease has also eluded the World Health Organization (WHO) and the Ugandan Ministry of Health who said, “At this moment, it is still a mysterious disease”.

Nodding disease was first recognized in Tanzania fifty years ago. Cases were reported in Liberia and Sudan in the 1980s and as many as 300 children were affected in South Sudan 10 years ago. The Nodding Syndrome started in 2009 in the northern Ugandan districts of Kitgum, Lamwo and Pader.

There may be a light at the end of the tunnel. Some scientists believe there is a link between nodding disease and the parasitic infection, Onchocerciasis, or river blindness.

The WHO reports that 93% of children with nodding disease live in areas where Onchocerciasis is prevalent. In addition, they note that in both conditions, a modest deficiency of vitamin B6, zinc and selenium are seen. Anti-epileptic drugs have been effective in treating the children affected.

In Uganda, the issue has turned political as citizens say the government, including President Museveni,  is deliberately ignoring nodding disease. More and more people are protesting government inaction in Uganda.

On Wednesday, Women activists tied themselves on trees for 30 minutes yesterday to show solidarity with mothers whose children are suffering from nodding disease syndrome according to the Ugandan Monitor.

The women condemned the government saying that mothers in northern Uganda are suffering psychologically because of having to tie their sick children to trees to save them from injury when they fall.

The government is starting to do something for the afflicted. Health Minister, Dr. Christine Ondoa announced the opening of a health center in Kitgum specifically to treat nodding disease patients and to train health workers.

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About the Author

- Robert Herriman, MPH,M(ASCP) is a health, politics and world news writer at the

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