Nodding disease: Experts embark on new research

By Pascal Kwesiga  

International and local medical experts have agreed to undertake a fresh comprehensive research study in Uganda, South Sudan and Tanzania to gather more information about the mysterious nodding syndrome.

The exact cause of nodding disease is still alien to both international and local medical experts.

 So far, the mysterious disease has claimed the lives of some 200 children in northern Uganda and affected scores of families.

Previous research studies undertaken by international health organizations have failed to establish the actual cause of the nodding syndrome.

It is associated with repetitive head nodding and convulsions.

Experts who have been attending an international scientific conference on nodding disease that ended Thursday this week at Sheraton Hotel in Kampala have resolved to conduct a fresh study to obtain more relevant information.

The data sought after would assist in arriving at concrete conclusions on the actual cause and possible cure of the disease.

The conference was organized by the World Health Organization and was intended to find new response strategies to the disease.

 It was attended by health experts and researchers from Center for Disease Control, UK Department for International Development, UNICEF and global health institutions and universities.

The medical experts unanimously agreed that a multi-disciplinary study must be undertaken in Uganda, South Sudan and Tanzania to establish if the disease presents itself with similar symptoms in the three countries.

Peter Spencer, a professor of neurology (School of Medicine) at Oregon Health and Science University in the U.S. said the new comprehensive study would involve examining food , water consumed by the nodding children, education, environment, nutrition and toxins, among others.

In South Sudan and Uganda where the disease is concentrated among children who were raised in internally displaced peoples' camps, Spencer said the researchers would focus on establishing the environment in which they grew up, the food they were fed on, untreated infections, soil and cultural beliefs, among others.

The experts also intend to use the new research to establish the type of the syndrome and whether the syndrome is neurologic, psychiatric or both.

Prof, Seggane Musisi from Makerere University College of Health Sciences said the victims who will be found to be having the neurologic type would be removed from epileptic drugs and a new type of treatment prescribed for them.

"There are many types of nodding disease and no one has ever categorized them. But we hope a new research will answer very many questions," he predicted.

Phillip Gelisse, an expert in epilepsy at the Montepellier University Hospital in France said: "We are here to try to understand the disease. I think the challenge is that no any country outside Africa has suffered from the disease and we are dealing with a new syndrome." 

The experts said the research study would start as soon as funds are provided but could not tell when they expect to get the money.