On a hot afternoon under the shade of a drought-ridden tree, fourteen year old Ojok Daniel (name changed) suddenly stopped eating. Ojok began staring into the distance and his head started to nod every 8-10 seconds. This episode lasted for about 5 minutes. Unfortunately, this is neither the first nor the last occurrence for Ojak. Described as Nodding Syndrome, a form of atypical seizures, Ojok is one among the many children in his village who are afflicted with this disease.
Health officials have seen Nodding Syndrome in geographically defined regions of northern Uganda, Sudan Sudan and Tanzania. The descriptions of the syndrome include head nodding that gets worse over time and is sparked by exposure to cold weather and familiar food, with additional cognitive and neurological dysfunction over time.
The road from Kampala to Kitgum District is scenic, with the quietly streaming Nile River providing a light background noise along parts of the journey. However, very abruptly the drive became rough as our vehicle careened onto a dirt road, the only indication of its existence being tire tracks of an earlier vehicle.
This served as our welcome to the epicenter of Nodding Syndrome in Uganda. Northern Uganda in February and March still manages to reach anywhere from 85 to 95 degrees Fahrenheit which, coupled with torrential rains and strong winds, made my two week trip anything but easy.
It had been six months since my last trip to Uganda, and I was returning to support the coordination of a follow-up survey estimating the prevalence of Nodding Syndrome. At the time the project was being led by Preetha Iyengar, an Epidemic Intelligence Service (EIS) Officer who had already been in the field for two weeks. Preetha, an energetic first year officer, brings with her a fresh mind loaded with many questions and a “ready to roll-up the sleeves” attitude. Accompanied by James Sejvar, a globe-trotting neuroepidemiologist from CDC, we were a good mix of experience, expertise and energy that CDC offered as support for the Nodding Syndrome.
A typical day in the field began anywhere between 7 and 8 am. We met with our site teams at the local district office to review plans and collect supplies for the day. We then traveled by car through parts of the country where infrastructure ranged from minimal to non-existent. Upon arriving at one of the three parishes where our survey took place; we were greeted by a gathering of children, their caregivers and village health team staff.
We were looking for children on our list of participants. If any of the children were not present, the local village health team members would travel on their well-worn bikes or by foot to track down the children and their caregivers and bring them to the site. This was all a part of the extreme effort made to include only those on our randomly selected participants list and not just use those participants who were conveniently available.
Despite the fact that we were working in an area without paved roads, lacking phone connectivity, and many times transforming the shade of trees into our survey station and interview rooms, all credit must be given to the volunteer village health team members who still helped to maintain the scientific rigor in the midst of harsh field conditions. Our day would end between 3 and 6 pm if all of the children sampled to participate were present and interviewed.