Over 4,000 miles long, the Nile River is the longest river in the world and winds through several different countries in Northeast Africa. Similar to the twists and turns of the river’s route, a circuitous path has led Dr. David Renner to East Africa—a trip that takes roughly 5,240 miles one way—to search for the causes of a neurological disorder that has re-emerged in the resource-limited communities of the South Sudan and northern Uganda region of the Noya district.
In 2014, Dr. Renner entered into a training program at the London School of Hygiene and Tropical Medicine (LSHTM) to receive formal education in tropical diseases. As a trained neurologist in the program, he gave several lectures to colleagues on the approach to neurological disorders in the tropics – an area not well represented in the curriculum of tropical medicine at the time. Upon graduation, Dr. Renner was asked to join a London-based training program that focused on educating physicians practicing in Kilimanjaro (Moshi), Tanzania and Kampala, Uganda how to diagnose and treat diseases seen in East Africa under extreme resource limitation.
At the time Dr. Renner was busy spearheading the development and dissemination of this training program, discussions were occurring several miles north between physicians in Northern Uganda and South Sudan regarding the appearance of what was thought to be a new and mysterious disease. This disease, occurring near waterways in some of the most remote communities in East Africa, largely affected children between the ages of 3-18 years old with initial symptoms of waning attention span, episodes of dizziness, withdrawal from social circles, and poor interest in the environment. Within a matter of months, these children experienced severe neurological and cognitive decline, behavioral issues, stunted growth, and episodes of “head-nodding” provoked by the sight of food, cool weather, or the breeze blowing on their skin. Children with the disorder began wandering into and drowning in the tributaries of the Nile River and falling into fires, many suffering fatal burns. The disability results from this neurological decline placed an incredible burden upon individual families, as well as the larger communities, which were already burdened with remote access to western medicine and vitamin deficiency.
A review of medical literature revealed similar symptoms and findings to this “newly emerging” neurological disorder dating back as far as 1962. Now called Nodding Syndrome, the onset of new cases appeared to start in 1997, peaking in 2007, with clusters of cases emerging immediately following a reign of terror imposed upon local communities by a rebel group called the Lord’s Resistance Army. These findings raised questions as to whether the disorder was a form of post-traumatic stress disorder from the civil warfare, a form of autism from ingested toxins, or if it was caused by genetic factors, heavy metal ingestion from weapons of mass destruction, vitamin deficiencies caused by food shortages, ingestion of grains intended for planting, tainted cooking oil, or even disruption of vaccination programs for measles.
Interestingly, when the cases of Nodding Syndrome are graphed, the clustering of patients correlate with the occurrence of an infectious disease called onchocerciasis, or river blindness. This infection also occurs largely along waterways of rivers and is transmitted by a black fly whose eggs and larvae reside in turbulent, well-aerated waters such as the Nile River. The fly, when infected, injects a microscopic worm into the skin of those it bites, spreading the onchocerciasis. Often termed river blindness, the infection initially manifests with itching and leads to bumps under the skin, pigment changes, and, ultimately, blindness.
While not 100% confident that Nodding Syndrome is caused by this microscopic worm infection in river blindness, physicians and scientists continue their research and are currently working on different approaches to combat this disease. Approaches include interrupting transmission of river blindness through the development of fly traps, stopping re-infection of new flies through medication, and using medication to interrupt the life cycle of the adult worm in patients. Dr. Renner, through the LSHTM’s program in East Africa, teaches clinicians how to confront a newly emerging disease, how to approach an epidemic from an infectious disease perspective, how to address control of the disease-carrier, how to define diagnostic criteria and treatment, how to collect patient data for research, and how to address community needs.
Leading a team of infectious disease and microbiology physicians from resource-limited areas to the areas most affected by this epidemic, Dr. Renner works with communities, basic science researchers, and members of the World Health Organization on projects to combat the river blindness epidemic. Together, Dr. Renner’s team is working to control the fly population through river douching, slashing overgrown brush along the riverbanks, capturing black flies along breeding grounds, developing specialized fly catchers designed to target the black fly, administering medication to combat the worm infection, performing spinal taps for research, and acquiring and interpreting EEG’s on infected patients.
It appears that the peak of the epidemic curve is now passing and Dr. Renner’s team is hopeful that it is the result of the combination of the above efforts. However, the disease is not fully contained and continues to plague the most remote of communities in some of the most resource-limited areas of the world, specifically in the South Sudan. Dr. Renner continues to work with the LSHTM on adding a defined curriculum for communicable and non-communicable neurological disorders to these educational programs that train clinicians for practice in East African countries. In addition, he is working with colleagues from London on the development of a new educational training program to be split between Japan and the Philippines, with a similar goal of educating local physicians how to practice tropical medicine in areas of east Asia, where need is highest.
“I have always felt that educating non-neurologists how to triage neurology patients at the primary care level is the way that I can influence the largest number of people possible” says Renner. While his clinical neurology practice here at the University of Utah is largely within the area of HIV, infectious, and hospitalist neurology, his educational endeavors have focused on low- and middle-income countries, addressing both communicable and non-communicable diseases. Dr. Renner describes the multidisciplinary approach to the practice of medicine in Africa to be challenging, but very rewarding due to his daily interactions with colleagues involved in entomology, parasitology, microbiology, and public health measures to control disease-carriers. “This is not the neurology that your teachers taught you in medical school.”
Dr. Renner has a lot of energy that propels him forward in his efforts to search for causes of the newly re-emerging neurological disorder, “You always try to move forward in life constantly, but lessons are most easily learned when you look back to see if the dots connect.” When he works in East Africa, Dr. Renner says he receives quietness in life where he can look back on the river-like twists and turns of his journey and see the dots that connected, leading him to a challenging and fulfilling work where he can make a difference.