Resource November 25, 2019

Meet the Journalist: Esther Ruth Mbabazi

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Nodding Syndrome project page
English

A project documenting nodding syndrome in Northern Uganda, a disease with an unknown cause and no...

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Milly Lakot, 19, was diagnosed with nodding syndrome in 2008. She suffered burns in 2016 after falling into a fire during a seizure. Image by Esther Ruth Mbabazi. Uganda, 2019.
Milly Lakot, 19, was diagnosed with nodding syndrome in 2008. She suffered burns in 2016 after falling into a fire during a seizure. Image by Esther Ruth Mbabazi. Uganda, 2019.

For over two decades, the Northern Uganda has been tormented by a mysterious disease—Nodding Syndrome. Nodding Syndrome was first discovered in Tanzania in the 1960s and in the Ugandan districts of Kitgum, Pader, and Gulu in the 1990s. Cases of head nodding were first noticed during the 20 years of conflict between the Lord's Resistance Army (LRA) rebel group and the Ugandan government, when most of the Acholi population had been moved into internally displaced person (IDP) camps. Here, previously healthy children were observed to nod their heads in a repetitive way, frequently triggered by food, fire, or cold weather and this was accompanied by cognitive decline and stunted growth.

The Ugandan Ministry of Health estimates over 3,000 affected children in 2012. However, in December 2017, the only operating Nodding Syndrome care center was closed due to lack of funding. There have been 62 new suspected cases in Northern Uganda awaiting confirmation from the ministry of health.

When children are affected by the disease, their brains stop developing and their bodies begin to deform. In many cases, children are burnt when they suffer from seizures while next to a fire. At other times children drown in the wells and commonly wander off to the bush where they are lost for days at a time.

Researchers from the Centers for Disease Control (CDC) in September 2018 concluded that the disease is a brain degeneration caused by a presence and concentration of an 'abnormal protein' in the children's brain. The discovery is still fresh and there have not been any treatment measures suggested as yet. As the researchers continue on the quest for an understanding of the disease, the fate of the affected children and their care takers is still unknown.

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