KITGUM, Uganda — Augustine Languna’s eyes welled up and then his voice failed as he recalled the drowning death of his 16-year-old daughter. The women near him looked away, respectfully avoiding the kind of raw emotion that the head of the family rarely displayed.
“What is traumatizing us,” he said after regaining his composure, “is that the well where she died is where we still go for drinking water.”
Joyce Labol was found dead about three years ago. As she bent low to fetch water from a pond a half mile from Languna’s compound of thatched huts, an uncontrollable spasm overcame her. The teen was one of more than 300 young Ugandans who have died as a result of the mysterious illness that is afflicting more and more children across northern Uganda and in pockets of South Sudan.
The disease is called nodding syndrome, or nodding-head disease, because those who have it nod their heads and sometimes go into epileptic-like fits. The disease stunts children’s growth and destroys their cognition, rendering them unable to perform small tasks. Some victims don’t recognize their own parents.
Ugandan officials say some 3,000 children in the East African country suffer from the affliction. Some caregivers even tie nodding-syndrome children up to trees so that they don’t have to monitor them every minute of the day.
Beginning today, Uganda hosts a four-day international conference on nodding syndrome that health officials believe will lead to a clearer understanding of the mysterious disease.
World Health Organization officials in Uganda said the conference will be attended by about 120 scientists from all over the world. Anthony Mbonye, of Uganda’s Ministry of Health, said the conference will allow scientists to share knowledge about the disease.
Scientists are working to find the cause of the disease, which is stretching health-care capacities in the country and testing the patience of a community looking for answers as to why it attacks mostly children between the ages of 5 and 15, why it’s concentrated in certain communities, and whether it is contagious.
The U.S. Centers for Disease Control and Prevention, which has been investigating nodding syndrome at the request of the Ugandan government, has ruled out 36 possible causes since 2009 and is carrying out a clinical trial for potential treatments.
“We did repeated exams on several of these children and found that some of the children had stayed the same, some of the children had gotten worse, none of the children had improved,” said Scott Dowell, director of CDC’s Division of Global Disease Detection and Emergency Response.
Researchers are focusing on the connection between nodding syndrome and the parasite that causes river blindness, Dowell said, though it is not yet clear there are any links. Onchocerciasis, or river blindness, has been around for a long time, but nodding syndrome is somewhat new, he said.
Front Section, Pages 5 on 07/30/2012