Thomas Edison said that even seeming dead ends in his early electrical engineering work were steps forward: he’d discovered three thousand materials that couldn’t serve as lightbulb filaments and therefore had gotten closer to finding one that would.
Dr. Abdinasir Abubakar of the World Health Organization might say the same thing about nodding disease research in Uganda and Southern Sudan. Nodding disease, which causes seizures and brain atrophy in children 5-15 years old and is expected to eventually kill thousands of young people in the region, still has no known cause or cure.
When I interviewed him, he outlined several possible causal factors researchers have tested for so far through skin, urine, and blood samples from affected children: various parasitic infections, heavy metal poisoning, metabolic issues, genetic susceptibility to developing illness. So far the only commonality among patients seems to be infection with the Onchocheriasis Volvulus parasitic worm, but that’s prevalent in the region, including in plenty of areas without cases of nodding disease.
Future research directions include looking into the vitamin deficiencies sometimes observed in children with nodding disease and exploring the possible role of several toxic and infectious agents. And community health workers have been taught how to observe and survey families with sick children to collect epidemiological data.
In other words, the world’s leading medical organizations have sent several dedicated experts to look into this condition, but no one has found any conclusive leads. And, while Uganda hosts an international conference this month on nodding disease, no specific funds or organizations or even initiatives have been set aside just for the syndrome.
When asked how the rest of the world could assist with nodding disease research, Dr. Abubakar emphasized the need to recruit qualified scientists.
“Of course, readers and other good Samaritan people can contribute [money] through WHO, UNICEF, local organizations or other research institutions. But more important is the advocacy campaign to sensitize the researchers and clinicians to look into the NS problem and actively participate in the investigations.”
Uganda currently hosts an international conference on nodding disease research and treatment, with governmental and nonprofit researchers in attendance. Hopefully that, and the publicity efforts by Dr. Abubakar and others, will bring more brainpower to the table.
So, right now, maybe it’s up to the scientific communicators, and publicists and advocates, to propel nodding disease research forward by playing a role as vital as that of those working in the laboratory. All of us can inspire those with the necessary technical knowledge to get on board and work together to uncover causes and treatments.