17 February 2012

Uganda: Post-War Nodding Syndrome Puzzles Health Experts

Photo: Observer
A 12-year-old girl suffering from the disease is tied to a tree for 13 hours every day and kept from her siblings.

Three years after the first studies in to Nodding Syndrome were conducted, health experts have failed to come up with its underlying cause. The mysterious disease continues to affect children in northern Uganda, an area still recovering from war between the government and the rebel Lord's Resistance Army.

Researchers from the Centers for Disease Control and Prevention in Atlanta, USA, are in Uganda to investigate the cause and establish the most effective way to treat and manage the sickness.

About 3,000 children have been affected by the disease in the districts of Kitgum, Lamwo and Pader in northern Uganda and 93 per cent of the affected children are between five and 15 years of age.

The director, Division of Global disease detection and emergency response at CDC, Dr Scott Dowell, says the cause and cure of the disease are still not known.

"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 children becoming ill," he told RFI.

"We've done extensive laboratory investigations trying to find the cause of Nodding Syndrome. In fact we've ruled out more than three dozen different possible causes for Nodding Syndrome."


"But we have leads, we have the association with onchocerciasis, we have the low serum B6 concentrations and we have other ideas to follow up on in terms of the causes and we are committed to support the ministry of health of Uganda for as long as it takes to figure out the cause and the best way to treat these children," Dowell says.

Nodding syndrome

Nodding Syndrome is a newly recognised condition affecting many young children in developing nations. It's characterised by repetitive dropping forward of the head, seizures. The affected children are stunted, malnourished and dehydrated.

The disease was first reported in northern Uganda in 2009 but health experts diagnosed it as epilepsy. The disease has attracted international attention due to the progressively worsening head nodding, cognitive decline and malnutrition among suffering children.

"We knew that the children had this bizarre nodding but the explanation for the nodding was not known," Dowell explains. "Since December 2009 we have documented the cause for the nodding itself and found that these children have a severe seizure disorder."

Uganda's health ministry, with the help of CDC, has conducted a series of investigations to establish the cause of the disease but has so far not come up with any results.

Treatment centres set up

The commissioner for health services in the ministry of health, Dr Anthony Mbonye, says treatment centres have been set up and children will be treated with epilepsy drugs.

"We have sent teams to the northern region, right now we have establish treatment and screening centres in the district," he reports. "Some of those severely sick children should be handled by professional psychiatrists. They should be put on treatment ... so that they are managed and looked at in terms of nutrition."


Doctors say research conducted has shown that the disease is not contagious.

"There is nothing about the epidemiology of this disease that indicates person-to-person transmission and we don't believe these children pose a risk to others," says Dowell. "We are committed to finding the cause, and continuing to follow up the leads, in the meantime it is important to figure out what's the best way to manage these children."

The nodding syndrome has also been reported in South Sudan with children suffering convulsions or staring spells.

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