Epilepsy in the onchocerciasis endemic area of Deim Zubeir, South Sudan: A household survey
High epilepsy prevalence and mortality has been reported in onchocerciasis-endemic areas with suboptimal elimination programs in South Sudan. In Deim Zubeir, an onchocerciasis-endemic area in Western Bahr El Ghazal state, demand for antiseizure medication is high, but epilepsy prevalence has never been investigated.
A two-step household survey was conducted in four locations in Deim Zubeir over two weeks in July 2023. Community volunteers screened household members for epilepsy and blindness, and asked about recent household deaths. Those with suspected epilepsy were referred to a doctor for diagnosis confirmation.
A total of 7,807 individuals in 1,803 households participated in the survey; 180 (2.3%) had epilepsy. The point prevalence of active epilepsy was 23.1 per 1,000 persons. The median age of persons with epilepsy (PWE) was 25 years, and median age at onset of seizures was 14 years. 5.3% of PWE were blind in at least one eye, 40.7% had burn lesions, and 24.7% had skin lesions compatible with onchocerciasis; 55% met the criteria for onchocerciasis-associated epilepsy (OAE). PWE were six times more likely to die within one year than people without epilepsy, with a median age of death of 21.5 years compared to 41 years for people without epilepsy.
Epilepsy prevalence and epilepsy-related mortality in Deim Zubeir are high, likely because of ongoing Onchocerca volvulus transmission. Strengthening the local onchocerciasis elimination programme, ensuring consistent access to epilepsy care, and increasing advocacy and funding for early identification and uninterrupted, free access to antiseizure medication are urgently needed in this remote, impoverished area.