Treatment and prevention of epilepsy in onchocerciasis-endemic areas is urgently needed

Background There is increasing epidemiological evidence supporting the association between onchocerciasis and seizures, reinforcing the concept of onchocerciasis-associated epilepsy (OAE). The aim of this paper is to provide an update on the new knowledge about OAE and to propose recommendations to the World Health Organization how to address this public health problem.Main text During the 2nd International Workshop on OAE held on 19-21 September, 2023, in Antwerp, Belgium, participants recognised OAE as a substantial yet neglected public health problem, particularly in areas of sub-Saharan Africa where onchocerciasis remains hyperendemic. Evidence from prospective population-based studies suggest that strengthening onchocerciasis elimination efforts leads to a significant reduction of OAE incidence. There is a need to validate an OAE case definition to estimate the burden of disease and identify onchocerciasis-endemic areas requiring intensification of onchocerciasis elimination programmes and integration of epilepsy care. It is expected that raising awareness about OAE will boost the population uptake of ivermectin. The implementation of a community-based epilepsy treatment programme offering free anti-seizure medications (ASMs) has shown high effectiveness in reducing the frequency of seizures and improving the overall quality of life of people with epilepsy.Conclusions To reduce OAE burden, enhanced collaboration between onchocerciasis and mental health programmes at community, national, and international levels is required. Urgent efforts are needed to ensure the uninterrupted provision of free ASMs in onchocerciasis-endemic areas. Furthermore, OAE should be included in the quantification of the onchocerciasis disease burden.

The effect of bi-annual community-directed treatment with ivermectin on the incidence of epilepsy in onchocerciasis endemic villages in South Sudan:a study protocol

Background:Nodding syndrome(NS)is a devastating epileptic illness of unknown aetiology mainly affecting children 5-15 years of age.Head nodding distinguishes NS from other forms of epilepsy.Other manifestations of the illness include mental and physical growth retardation.Many children die as a result of falling in fires or drowning.Recently,it was shown that NS is only one of the phenotypic presentations of onchocerciasis associated epilepsy(OAE).Despite the strong epidemiological association between epilepsy and onchocerciasis,the causal mechanism is unknown.After implementation of bi-annual community directed treatment with ivermectin(CDTi)and larviciding of rivers in northern Uganda,new cases of NS have ceased,while new cases continue to emerge in South Sudanese onchocerciasis-endemic areas with an interrupted CDTi programme.This study is designed to evaluate the potential effects of bi-annual CDTi on reducing the incidence of NS/OAE in onchocerciasisendemic areas in South Sudan.Methods:A pre-intervention door-to-door population-based household survey will be conducted in selected onchocerciasis-endemic villages in Mundri and Maridi Counties,which have a high prevalence of epilepsy.Using a validated questionnaire,the entire village will be screened by community research assistants for suspected epilepsy cases.Suspected cases will be interviewed and examined by a trained clinical officer or medical doctor who will confirm or reject the diagnosis of epilepsy.Bi-annual CDTi will be implemented in the villages and a surveillance system for epilepsy set up.By implementing an epilepsy onchocerciasis awareness campaign we expect to obtain>90%CDTi coverage of eligible individuals.The door-to-door survey will be repeated two years after the baseline survey.The incidence of NS/OAE will be compared before and after bi-annual CDTi.Discussion:Our study is the first population-based study to evaluate the effect of bi-annual CDTi to reduce the incidence of NS/OAE.If the study demonstrates such a reduction,these findings are expected to motivate communities in onchocerciasis-endemic regions to participate in CDTi,and will encourage policy makers,funders and other stakeholders to increase their efforts to eliminate onchocerciasis.