Dec 13, 2023

Unraveling the enigma of Nodding Syndrome

Programs: Graduate, Agile education, Research: Brain & Neuroscience, Inclusive community
a small group of people looking at the camera
Kenneth Kodja
The team in Uganda (from left to right): Dr. Sylvester Onzivua, Dr. Michael Pollanen, Joe Otto, MSc student Kenneth Kodja, George Otto
By Kate McDonald

In the realm of medical mysteries, there are certain conditions that challenge our understanding of the human body and the factors that influence health. Nodding Syndrome, a rare and devastating neurological disorder, has baffled researchers. Nodding syndrome is a neurodegenerative disease that mostly affects children in eastern Africa, causing a range of symptoms that progress from repetitive head nodding to cognitive and behavioral issues, epilepsy, and even Parkinsonian-like symptoms. 

Kenneth Kodja, MSc student in the lab of Dr. Michael Pollanen, has been studying this disease to unravel the mystery surrounding its origins. “Being originally from Africa myself and an immigrant here, conducting research that has a global health aspect has always been important to me” Kenneth explains, “I contacted Dr. Pollanen and luckily, he chose me to continue this research with him. I was particularly interested in studying Nodding Syndrome as those affected by it belong to a vulnerable population in the world that unfortunately doesn't get much attention”.

Kenneth recently had the opportunity to travel to Uganda, where the disease has been especially prevalent. He got to experience the intricate process of studying brain samples from fatal cases, characterizing the neuropathological hallmarks of Nodding Syndrome and correlating them with clinical symptoms, while also processing the emotional impact of witnessing the disease's effects firsthand. 

The origins of nodding syndrome remain elusive “There have been many hypotheses. There's no set theory or direct evidence,” notes Kenneth. What makes this condition particularly perplexing is its localized occurrence during specific timeframes. “It basically came and went,” says Kenneth. The disease was first observed in the early 2000s in Uganda, during a civil conflict. A large part of the civilian population in Northern Uganda was moved to internally displaced person (IDP) camps and it was here the disease was first noticed in previously healthy children. After 2009, there has been few reports of new cases. 

“It could be nutrition – what they were fed in the camps. It could be malnutrition. It could be a result of being exposed to warfare chemicals, a neurotoxin or biological agent, considering the environment they were in.” Kenneth notes that parasitic infection has been the main theory that researchers most recently considered, but nothing definitive has been proven. “Our lab is focused on describing what we see in the brain and how it correlates to the symptoms that these individuals show.”

While understanding the disease and searching for its cause is an important part of the problem Nodding Syndrome poses, Kenneth has also witnessed the difficulty surrounding the disease management. Caring for individuals with Nodding Syndrome presents significant challenges, particularly in regions with limited resources. “Most individuals suffering from this disease were unable to go to school due to the neurological effects of the disease. The symptoms that these individuals present with range from behavioural impairments, like aggression and hyperactivity, to psychiatric visual and auditory hallucinations. They can wander away from their homes and villages which is dangerous for them.” Most families with children who are affected by the disease, cannot provide the level of supervision and care needed.

However, with the right resources there is hope for individuals with Nodding Syndrome and their families. “Some research shows that if these individuals are given appropriate nutrition, physical and psychosocial therapy, counseling, and medication like anti-epileptic drugs, their symptoms are shown to improve. There is no cure, but their quality of life can improve, lessening the burden on families.” Unfortunately, the widespread accessibility of these resources remains a pressing issue. Kenneth hopes that bringing more attention to the disease and how it is affecting this population will result in further investment of time, energy and resources that will contribute to finding a resolution for the affected families. The dedication of researchers like Kenneth and Dr. Pollanen means that progress can be made towards potential treatment avenues, providing relief to these individuals and their families. 

Reflecting on his role in researching Nodding Syndrome, Kenneth says, “I never thought I'd be involved in a project of such magnitude. It's not only about how unique the disease is but also how unique and fascinating every aspect of it is clinically, pathologically and even politically.”

Kenneth has now finalized his thesis but plans to remain involved in the project on a part-time basis. In the future he hopes to obtain his MD so he can continue helping populations like this as a clinician-scientist. 

This story showcases the following pillars of the LMP strategic plan: Dynamic Collaboration (pillar 2), Impactful Research (pillar 3), and Agile Education (pillar 5)