NAIROBI (AlertNet) – Scientists from around the world have for the first time agreed on a common name, definition and research agenda to help understand and address a mysterious, incurable disease called nodding syndrome, which affects thousands of children in East Africa.
Named after its seizure-like episodes of head nodding, the syndrome, which mostly affects children between five and 15, has killed more than 200 children in Uganda alone in the past three years. Ugandan authorities estimate it affects more than 3,000 children in the country.
"We came up with a platform for future research," the World Health Organization’s representative in Uganda, Joaquim Saweka, told AlertNet by phone as a four-day conference in Kampala attended by 120 scientists from all over the world closed on Thursday.
"That is an important achievement to avoid repetition and duplications and maybe to move forwards in trying to fill in the key gaps in our knowledge about nodding syndrome."
Nodding syndrome was first documented in Tanzania as early as 1962. Fifty years later, researchers still don't know what it is.
Nodding syndrome causes young children and teenagers to nod violently while eating. As the seizures are often triggered by food, children who have nodding syndrome become undernourished and mentally and physically stunted.
Children with nodding syndrome are prone to accidents such as drowning and burning because of mental impairment, and many of the fatalities from the disease are the result of these secondary causes. Their parents often tie them to trees to reduce the chance of accidents.
The scientists agreed to call it nodding syndrome, rather than disease.
A syndrome describes an illness for which doctors only know the symptoms. For something to be defined as a disease, they have to know how it is caused.
Another achievement was to agree on a common case definition, or terms of reference used by doctors to decide if a given patient has a certain disease or not.
“This will be very important going forward to make sure that when we talk about nodding syndrome we are all talking about the same thing,” said Scott Dowell, director of the division of global disease detection and emergency response of the U.S. Centers for Disease Control.
Saweka believes that the syndrome may also be identified in other countries beyond Uganda, South Sudan and Tanzania.
“Now that we have these common standards, maybe some other countries will come up also diagnosing nodding syndrome,” he said.
(Additional reporting by Justin Dralaze in Kampala)