Nodding syndrome preys on the displaced

By Racheal Ninsiima
Posted on Tuesday, 30 July 2013 16:04

Ojok has the frame of four year old, and yet he is 14 years old. His body is miserably thin and frail, his back severely hunched and his eyes teary. He should, at 14, be able to construct sentences, but all he is able to say is ‘wota…wota…’ a desperate attempt to say his name.

Ojok is afflicted with an unexplained neurologic condition called Nodding Syndrome, characterised by episodes of repetitive head dropping movements, and accompanied by seizures and convulsions, as well as ‘staring’ spells.

Even as he is severely under-nourished, the sight of food acts as a trigger intensifying the symptoms.

Ojok was born in Aware Camp, a refuge for those escaping the Lord’s Resistance Army (LRA), who ravaged northern Uganda and abducted children for training as child soldiers.

“At the age of eight my son started getting convulsions,” said Ojok’s mother, Alice Akwero. “When we tried to give him food, he would nod his head and begin to drool.”

Ojok would become the first child to display the condition’s unique symptoms at Awere camp. Being susceptible to falling into fires or drowning, when convulsing or wandering off, Ojok required a carer at all hours of the day.

When the family left the camp in 2007, after peace had returned to northern Uganda, Ojok’s mother charged three of her children to remain at home to help with his upbringing.

Hard Lessons

Yet Ojok, while physically wasting away, is one of the luckier ones.

Since the start of 2013, three children have died from the condition.

According to last year’s records from the Office of the Director-General at Uganda’s Ministry of Health, more than 3000 cases were registered in the northern districts of Lamwo, Kitgum and Pader, where the condition was first registered in 2010.

To date, 17 deaths have been reported. In Odek, where Ojok is based, over 300 children are known suffer from nodding syndrome.

The cause of the condition has thus far eluded many epidemiologists. Parallels have been drawn with the black fly-borne parasitic disease called onchocerca volvulus or river blindness, but results of diagnosis remain inconclusive.

“We don’t know the cause and therefore we can’t be definite about how these children are acquiring the disease or why there are more cases of children becoming ill,” said Dr Anthony Mbonye, the Commissioner of Health services in the Ugandan Ministry of Health.

To manage the syndrome, in 2012, the Ministry of Health provided more than one million tablets of the generic anti-convulsant ‘sodium valproate’, following recommendations from the World Health Organization (WHO) and U.S. Centers for Disease Control and Prevention (CDC).

Moresco Komira, who heads Odek’s humble Health Centre, said that drugs had significantly reduced the frequency of seizures, down from an average of eight to three per day as well as the duration of head nodding.

However many of the disease’s victims face mental retardation and stunted growth.

Further investigations by the Ministry of Health revealed that the syndrome would likely fall into the category of a new form of epilepsy, reportedly affecting at least 3,000 children in Northern Ugandan districts – specifically those impacted by the LRA.


The story began 25 years ago when the Acholi tribe of northern Uganda was forced to relocate 2.5 million people into Internally Displaced Persons’ (IDP) camps, escaping the brutality of the LRA led by the infamous Joseph Kony.

Thousands of children were abducted from their homes and forced to become child soldiers and sex slaves for Kony’s army.

The squalid conditions of the IDP camps resulted in over 60,000 people dying due to malnutrition, lack of clean water etc. Diseases such as cholera often broke out.

For more than two decades, survivors waited for the war to end. In the meantime, their villages, crops, and livestock were destroyed.

“In late 2007, the Acholi people were instructed by the government to go home. The camps were torn down and the people were forced begin a new life some, beginning it in the bush,” Julius Peter Omoro, a Gulu elder recollects.

The Acholis returned home with unforgettable experiences and even something more insidious – Nodding Syndrome.

Before discovery in Uganda, the syndrome had been identified in the South Sudan communities of Maridi and Witto and southern Tanzania, both of which has a significant population of internally displaced persons.

The Ugandan Ministry of Health has since approved 13 research reports on preventive strategies to control the syndrome. Four are yet to be funded.

However the lack of human resources, including medical staff, has hindered health units from reaching out to sufferers of the condition, all of them under the age of 18 years. Moreover, medicines are fast running out.

One effort to determine the cause of the syndrome involves spraying the creeks and rivers with a special insecticide, which targets the river blindness bearing black flies.

This will enable experts to determine the extent of the relationship between this disease and the Nodding Sydrome.


In August 2012, Dr Suzanne Gazda and Dr Sally Bayton, neurologists based in the US, established Hope for Humans, a centre providing psycho-social support to children afflicted with Nodding Syndrome, and their parents.

It provides access to health care, nutrition, medication and special needs education to 40 children in the full time program and 30 in outreach.

“Before the centre started, some parents used to leave their children tied to a tree to bar them from wandering off while others were tied to the back seat of bicycles as their parents took them to receive medication,” said Collines Angwech the Centre’s Director of Operations.

Today, Ojok and 300 others are able to access life-saving anticonvulsants from the centre, within reach of home.

Meanwhile, 40 others are learning to read, write and eat three meals a day.

Whether the syndrome is caused by environmental circumstances or not, the existence of Nodding Syndrome reveals the vulnerqbility of internally displaced persons to unsafe water and other resources.

It also illustrates that war has more than one way of destroying a nation.

Racheal Ninsiima is a member of Forum for African Investigative Reporters – FAIR

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