What is it about?
We studied epilepsy in five counties of South Sudan, where river blindness (onchocerciasis) is still widespread. We visited over 5,000 families and found that epilepsy is much more common in these communities, especially in villages near rivers where the blackflies that transmit river blindness breed. Persons with epilepsy in these areas were also seven times more likely to die early, often passing away around age 20 years, compared to age 40 for those without epilepsy. We also found a clear link between ongoing river blindness transmission (measured in children) and both the prevalence and severity of epilepsy. Our research highlights the pressing need to improve both epilepsy treatment and river blindness control in these communities.
Featured Image
Photo by Ortopediatri Çocuk Ortopedi Akademisi on Unsplash
Why is it important?
Many people in sub-Saharan Africa struggle with epilepsy, but those living in areas affected by river blindness face an especially high burden. Our study is one of the largest to show just how severe the problem is: epilepsy is both more common and more deadly in these areas than previously thought. This work calls for health authorities to better integrate epilepsy care and river blindness control, so that fewer children and adults will suffer or die from this preventable burden.
Perspectives
I feel privileged to have worked closely with dedicated colleagues and communities on this project. Seeing how epilepsy and river blindness affect families has been both humbling and motivating. I hope this research helps shine a light on neglected diseases and encourages investment in health services that really make a difference on the ground.
Luís-Jorge Amaral
Universiteit Antwerpen
Read the Original
This page is a summary of: High epilepsy prevalence and excess mortality in onchocerciasis-endemic counties of South Sudan: A call for integrated interventions, PLoS Neglected Tropical Diseases, June 2025, PLOS,
DOI: 10.1371/journal.pntd.0013244.
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Resources
What is the link behind river blindness and epilepsy?
Blackflies are the vectors that transmit the parasitic worm Onchocerca volvulus. This worm causes onchocerciasis or river blindness. A high prevalence of Nodding syndrome (NS) and other forms of epilepsy has been observed in onchocerciasis-endemic regions in Africa for decades. Recent epidemiological studies suggest that O. volvulus is the trigger causing the seizures, which appear in previously healthy children between the ages of 3 and 18 years.
Joseph Nelson Siewe Fodjo manages river epilepsy
Africa is being ravaged by a terrible disease: river blindness. The parasite carrying the virus affects the brain and causes epileptic seizures. Infected children and young adults suffer mental retardation as a result. Joseph Nelson Siewe Fodjo, postdoctoral researcher affiliated with the Global Health Institute (Faculty of Medicine and Health Sciences), explains how he aims to turn the tide by mapping the impact of river epilepsy on children.
Elimination of “river epilepsy” has started in South Sudan
A rapid assessment showed that one in six children had epilepsy and one in two families had at least one child with epilepsy. I felt very uncomfortable because I had nothing to offer them to reduce the suffering in this village: no advice to give on how to protect children from developing develop epilepsy and no treatment to provide. However I promised the local community that I would do my best to come back with a solution (Prof. Robert Colebunders).
Investigating virus-induced morbidity in filarial infections
Recently, my research group co-discovered a virus (OVRV1) within the river blindness "O. volvulus" parasite. Being related to the rabies virus family, OVRV1 could potentially cause the epilepsy associated with river blindness. I will investigate the clinical implications of this virus in >1600 persons from 3 affected countries (Prof. Joseph Fodjo).
Contributors
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