Story

A Devastating Illness Rocked Uganda, Then Disappeared. Disabled Children — and a Mystery — Remain

September 26, 2019 | STAT
By
Esther Ruth Mbabazi
Margaret Arach, 42, watches her children at her home in Pader District, Northern Uganda. She is the sole caretaker of her seven children, two of whom suffer from nodding syndrome. Image by Esther Ruth Mbabazi. Uganda, 2019.

Margaret Arach, 42, watches her children at her home in Pader District, Northern Uganda. She is the sole caretaker of her seven children, two of whom suffer from nodding syndrome. 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.

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. 

Lucy Acaa at a government health center where she gets anti-seizure medicine for her two children with nodding syndrome. Image by Esther Ruth Mbabazi. Uganda, 2019.

Lucy Acaa at a government health center where she gets anti-seizure medicine for her two children with nodding syndrome. Image by Esther Ruth Mbabazi. Uganda, 2019. 

Acaa’s children Walter Ochora (center), 16, and Grace Aciro (right), 18, at home with one of their brothers. Image by Esther Ruth Mbabazi. Uganda, 2019.

Acaa’s children Walter Ochora (center), 16, and Grace Aciro (right), 18, at home with one of their brothers. Image by Esther Ruth Mbabazi. Uganda, 2019. 

Walter Ochora was diagnosed in 2009 and was started on treatment right away. Image by Esther Ruth Mbabazi. Uganda, 2019.

Walter Ochora was diagnosed in 2009 and was started on treatment right away. Image by Esther Ruth Mbabazi. Uganda, 2019. 

Brenda Apio, 15, at home in Awere, in Northern Uganda. Brenda contracted the disease in 2006 while living in a displaced persons camp during the war against the Lord’s Resistance Army. She lost her sight in 2013 because of the powerful seizures she experiences. Image by Esther Ruth Mbabazi. Uganda, 2019.

Brenda Apio, 15, at home in Awere, in Northern Uganda. Brenda contracted the disease in 2006 while living in a displaced persons camp during the war against the Lord’s Resistance Army. She lost her sight in 2013 because of the powerful seizures she experiences. Image by Esther Ruth Mbabazi. Uganda, 2019. 

Affected children are given anticonvulsants twice a day. Image by Esther Ruth Mbabazi. Uganda, 2019.

Affected children are given anticonvulsants twice a day. Image by Esther Ruth Mbabazi. Uganda, 2019. 

Grace chats with her mother at their home. She contracted the disease in 2005. Image by Esther Ruth Mbabazi. Uganda, 2019.

Grace chats with her mother at their home. She contracted the disease in 2005. Image by Esther Ruth Mbabazi. Uganda, 2019. 

Walter, 16, usually plays at home with his young brother Emmanuel. His condition is stigmatized in the community, and other parents do not allow their children to play with him, afraid they will also contract nodding syndrome. Image by Esther Ruth Mbabazi. Uganda, 2019.

Walter, 16, usually plays at home with his young brother Emmanuel. His condition is stigmatized in the community, and other parents do not allow their children to play with him, afraid they will also contract nodding syndrome. Image by Esther Ruth Mbabazi. Uganda, 2019. 

Two decades ago, in a small pocket of Northern Uganda, something peculiar and tragic started happening. Children began suffering seizures, not just occasionally but numerous times a day. Their neck muscles would go temporarily limp, causing their heads to bob.

The illness came to be called nodding syndrome. Nobody knew where it came from, but it devastated many of its victims, causing severe developmental delays and psychiatric disturbances. Many died from having seizures at unfortunate moments that resulted in burns, falls, or drownings.

Then it disappeared, just as mysteriously. No new cases have been reported since 2015, according to the Ministry of Health...

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