Community Survey for Nodding Syndrome in Northern Uganda – CDC an Unfailing HopePosted on by
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, South 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 between 3 and 6 pm if all of the children sampled to participate were present and interviewed.
This survey was the second phase of our project and involved interviewing a sampled subset of children whose caregivers had answered yes to the question “does your child have nodding syndrome?” in our first survey conducted over the summer of 2012. By asking a series of questions intended to capture everything from clinical symptoms, response to medications, and neurocognitive abilities as well as taking body measurements, the Uganda Ministry of Health and CDC aimed to conduct the first scientific measure of Nodding Syndrome prevalence. It is our hope and expectation that by understanding how many and how severely the children are affected, we can better direct resources and projects aimed to identify the cause and treatment of Nodding Syndrome.
Primarily affecting children aged 5-15 years old; Nodding Syndrome is a form of seizure disorder in which children repeatedly bob their head forward. Accompanied by neurologic and cognitive symptoms, children with this syndrome come to require around the clock care. I see families and communities depressed and dejected as they watch their children deteriorate in front of their eyes; caregivers express the frustration of having to provide 24/7 care and the toll it takes on their entire family. Forced to stay at home to care for the sick child and unable to work to provide for their other children, or forced to tie those children with Nodding Syndrome to a tree in order to prevent them from wandering off or injuring themselves, the families and communities in this region are slipping into a vicious cycle of poverty, malnutrition and sickness. Often occurring in many families in the same village, the whole community has had to face the burdens that accompany Nodding Syndrome.
Despite these hardships that will remain etched on the canvas of my memory, I left Uganda with tremendous hope. It is this same hope that makes these families still care for their affected children and that prompts caregivers to participate in surveys like these knowing very well that there is no individual therapeutic benefit being offered. This is the hope. And in the midst of this hope I could clearly see the true face of the CDC; the true face that perhaps can only be seen and perceived out in the field. Out here in the field I see what CDC truly reflects, and it is more than just an ordinary Federal agency. CDC is that ‘unfailing hope’ of these children, families and communities afflicted with Nodding Syndrome and an agency that will translate that hope into realization. CDC is and will remain that ‘unfailing hope’ that doesn’t just promise to take the world towards a safer healthier future but leaves behind a confidence in the most impossible situations, promising to come back to realize that dream.