Nodding Syndrome is an epileptic epidemic that was first identified in the Mahenge Mountains of Tanzania (WHO, 2012). This discovery was made by a young Norwegian physician named Louise Jilek-Aall in 1960s. Dr Jilek-Aall was a physician specializing in neurology with a focus on epilepsy, and to this day she continues her efforts as a professor emeriti at the University of British Columbia in Vancouver. (Williams, 2012)
Dr Julek-Aall had noticed there was a concerning demographic arising within the patient population she was treating at the Mahenge Epilepsy Clinic. This sub-group all shared a unique trait. The symptomatology began with the child losing muscle tone of the neck leading to a distinct dropping forward or “nodding” of the head. Consciousness would be impaired at times, and these episodes of repetitive “nodding” would last anywhere from 2 minutes to 2 hours, then be followed by a drowsing post-ictal phase, normally seen after a patient has a seizure (Winkler, et al., 2008). This nodding was in fact discovered to be a form of seizure (WHO, 2012) and these children, when left untreated, would have on average 20+ episodes of nodding a month. (Winkler, et al., 2008)
This would be the beginning of the health decline these children would experience. Nodding Syndrome has a variety of affects on the continuum of health. It begins with a focal “nodding” seizure then progresses into a permanent cognitive decline leading to mental retardation (Winkler, et al., 2008) accompanied by drooling, malnutrition, stunted growth and wasting (WHO, 2012). What is more concerning is that head nodding for many can develop into more severe and potentially violent partial and generalized seizures. Anti-seizure medication is not always effective in controlling them (Winkler, et al., 2008) and these uncontrolled seizures commonly lead to injuries as the children fall to the ground or in campfires. (Donnelly, 2012)
The majority of the children affected by Nodding Syndrome (NS) are diagnosed between 5-15 years of age. (Reik, et al., 2012) The fatal course of this syndrome is a long one, taking years to end in the final result of permanent psychological and physical dependence on caregivers. The majority of the time, children do not die from the disease but the secondary symptoms. The majority of documented cases of death resulted from seizure-related accidents, drowning and burns. (Donnelly, 2012)
To date there is no known cause or cure. (Reik, et al., 2012) Scientists have found there exists a significant association of the syndrome involving Onchocerciasis, a parasitic disease caused by the filarial worm, also known as River Blindness. However, this association does not necessarily imply a causative relationship. (Williams, 2012)Finally the greatest focus of concern is that the numbers of children seen affected by this syndrome is growing (WHO, 2012). Dr Julek-Aall discovered it in Tanzania in the 1960s, then it was found in South Sudan in the 1990s, then in Northern Uganda in 2003, and as of the summer of 2013 there are approximately 10,000 children afflicted between the three countries with over 3,000 of them residing in Northern Uganda (WHO, 2012).