Research Snapshot: Preventing devastating 'river epilepsy'

Onchocerciasis, also known as ‘river blindness’, is an eye and skin disease that causes severe discomfort and can lead to permanent blindness. Onchocerciasis, in the absence of an efficient elimination programme is also associated with high rates of epilepsy (onchocerciasis associated epilepsy- OAE- or ‘river epilepsy’). Nodding syndrome and Nakalanga syndrome are two forms of ‘river epilepsy’ which can lead to severe disability and early death.

A community-based programme in Western Equatoria State, South Sudan, showed that strengthening onchocerciasis elimination efforts can prevent children from developing onchocerciasis-associated epilepsy (river epilepsy). A vector control method to eliminate blackflies (which transmit onchocerciasis to humans) was extremely successful. In addition, a community-based epilepsy treatment programme was able to improve the quality of life of persons with epilepsy and increased schooling of children with epilepsy. The results suggest that OAE- river epilepsy- is preventable and the interventions could be scaled up.

This snapshot contains key messages, findings, implications for humanitarian policymakers and practitioners and recommendations for further research.