Evaluating epilepsy management in an onchocerciasis-endemic area: Case of Maridi, South Sudan
An epilepsy treatment programme offering regular follow-ups and free anti-seizure medication at epilepsy clinics has helped reduce epilepsy-related mortality and improve the quality of life for individuals with epilepsy.
The epilepsy prevalence in Maridi County, South Sudan, in 2018 was 43.8 per 1,000 persons; 85.2% of persons with epilepsy (PWE) met the criteria of onchocerciasis-associated epilepsy (OAE). To address this, an epilepsy clinic was established at Maridi County Hospital in 2020. In August 2023, the impact of the clinic on the lives of PWE and their families was evaluated.
At the Maridi epilepsy clinic, data routinely collected by primary healthcare workers was reviewed, alongside two household surveys conducted in 2018 and 2022. Four households in a high epilepsy prevalence area were visited, where PWE were examined by a neurologist and family members were interviewed.
The proportion of PWE on anti-seizure medication increased by 39.7% between 2018 and 2022. The proportion of PWE reporting daily seizures decreased from 27.3% in 2018 to 5.3% in 2022. Of the 754 PWE seen in the clinic in July 2023, only 17 (2.3%) reported side effects. During household visits in July 2023, 13/173 (7.5%) of the visited PWE were found without remaining anti-seizure medication. A high level of epilepsy-related stigma was observed in all visited households.
The Maridi epilepsy clinic positively impacted the lives of PWE in Maridi. Similar initiatives should be accessible for all PWE living in onchocerciasis-endemic areas. Evidence-based information about OAE is needed to decrease misconceptions and epilepsy-related stigma.
This publication relates to R2HC funded study: Innovative approaches to reduce the burden of disease caused by onchocerciasis