Augustine Languna’s daughter died of drowning in a well at the young age of 16. While drowning was the cause of death, a more sinister affliction actually made her drown. The traumatized father’s eyes well up as he recalls the daughter’s death.
Languna’s daughter is no exception. Joyce Labol too drowned in a pond under the impact of an uncontrollable spasm as she was fetching water. These two teenagers are among more than 300 Ugandan kids who lost their lives to a mysterious disease spreading across northern Uganda and parts of South Sudan.
The disease not yet identified properly is simply referred to as the nodding syndrome or nodding head disease because those afflicted with the disease nod their heads and at times go into epileptic like fits. Among the other symptoms, stunted growth and destruction of cognition with inability to perform simple tasks and severe loss of memory are notable,
According to the Ugandan official estimate, about 3000 children are currently afflicted with the mysterious disease. Caregivers are often known to tie their kids with nodding syndrome to trees so that they don’t have to monitor them every minute of the day.
The four-day international conference on nodding syndrome hosted by Uganda beginning Monday is likely to bring some hope to the worried parents with likely clearer understanding of the mysterious disease.
According to WHO officials in Uganda, the conference has attracted 120 scientists from all over the world who will share knowledge about the disease and likely find out the cause of the disease stretching the health care capacities of the poor African nation and the patience of the community.
There are several questions that need to be addressed; some of the most pressing among them include why the disease attacks children between 5-15 and why is it limited to certain communities. It is not known whether the disease is contagious.
According to the U.S. Centers for Disease Control and Prevention investigating this mysterious disease at the request of the Ugandan government, there is “clear evidence that this is an epidemic” about which little is known. They have ruled out 36 possible causes and are carrying out a clinical trial for potential treatments.
According to Scott Dowell, director CDC’s Division of Global Disease Detection and Emergency Response, “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.”
Although researchers have attempted to find link between nodding syndrome and the parasite that causes river blindness (Onchocerciasis), they have not been successful. Nodding syndrome is comparatively of a much recent origin. Also, it is unique to Uganda and parts of Sudan.
The community elders feel the disease is probably rooted in violence as it’s prevalent in places affected by the legacy of brutal war carried out by Joseph Kony, chief of a rebel group thriving on rape, murder, and abduction.
According to a WHO official in northern Uganda, “After the war there were so many cases of epilepsy. That's how this thing started”
Although the Ugandan health officials have been aware of the disease for the last ten years, yet active campaign against the deadly disease was undertaken only last year when opponents accused the authorities of criminal negligence.
In response, the government announced a $2.2 million package which has been slow to reach the treatment centers.