Community perception of epilepsy and its treatment in onchocerciasis-endemic villages of Maridi county, western equatoria state, South Sudan.

OBJECTIVE: To assess the community's perception of epilepsy and its treatment in onchocerciasis-endemic villages of Maridi County, Western Equatoria State, South Sudan. The study was conducted prior to the setting up of a community-based intervention to manage the important disease burden caused by onchocerciasis-associated epilepsy in these villages. METHOD: Five focus group discussions (FGD) were conducted with community leaders and with persons with epilepsy (PWE) and their families between November and December 2019. RESULTS: Villages close to the Maridi dam were considered to be most affected by epilepsy. Misconceptions about the cause and treatment of epilepsy were identified. Most people believed that epilepsy is caused by bad spirits and is contagious, transmitted through saliva, air, and contact with PWE. Very few participants were aware of the link between onchocerciasis and epilepsy. Persons with epilepsy are restricted in their day-to-day activities and children with epilepsy are often denied going to school. Persons with epilepsy are stigmatized and seen as unfit for marriage. Most participants considered both traditional and medical treatment as ineffective. Uninterrupted anti-seizure treatment continuously was unaffordable for most families with one or more PWE. CONCLUSION: There is a need to establish a comprehensive epilepsy treatment program which addresses misconceptions about epilepsy and reduces epilepsy-related stigma. Explaining the link between onchocerciasis and epilepsy could lead to a reduction in epilepsy-related stigma.

Mvolo County, an Onchocerciasis Endemic Area in Western Equatoria State, South Sudan: An Entomological Study to Prepare for a "Slash and Clear" Community-Based Vector Control Intervention.

Background: Mvolo in Western Equatoria of South Sudan has been a hotspot for Onchocerca volvulus transmission since the 1940s. In Mvolo onchocerciasis is a disease of public health importance, associated with onchocerciasis-associated epilepsy including nodding syndrome. Methods: We conducted an entomological study to map the breeding sites of blackflies (Simulium damnosum, sensu lato) on the river Naam, to allow the removal of vegetation from vector breeding sites, the "slash and clear". Three blackfly catching sites were established along the river. Focus group discussions were also conducted to assess the willingness of the communities to support the "slash and clear" intervention and the semi-annual distribution of ivermectin. Results: A total of 2466 female S. damnosum s.l. were caught in 14×11h (06.00-15.00) catches. The highest biting density of 4210.25 flies/month/h and monthly biting rate (MBR) of 11,482.25 bites/man/month were observed in November 2023. Biting density and MBR reduced to zero in the intervention site by April 2024. While the mean parity rate was 31% (CI: 0.2976±0.9176). Two diurnal biting peaks were observed, one from 9:00-10:00 (at the bridge site) and a prominent one from 14:00-15:00 in the two catching sites in Mvolo. Along the river Naam, only one site was found productive for S. damnosum s.l.; and the larvae and adults were morphologically associated with the anthropophilic S. damnosum. The "slash and clear" intervention was implemented at Dogoyabolu along the river Naam. Communities expressed willingness to support a "slash and clear" intervention and the semi-annual distribution of ivermectin. Conclusion: S. damnosum active breeding was identified along the river Naam in a stretch of 3-5 km close to human settlements. Highest blackfly biting density was 4210.25 flies/month/h, and two fly biting peaks were observed. A community "slash and clear" vector control was implemented, and will be prospectively monitored.

Epilepsy-related stigma and cost in two onchocerciasis-endemic areas in South Sudan: A pilot descriptive study.

INTRODUCTION: Epilepsy is a major public health concern in sub-Saharan Africa, particularly in resource-limited rural villages where persons with epilepsy (PWE) are often confronted with a wide treatment gap, frequent stigma and high cost of epilepsy care. We investigated stigma and economic cost related to epilepsy in the states of Maridi and Amadi in South Sudan, two onchocerciasis endemic areas with high epilepsy prevalence. METHODS: Between November 2019 and February 2020, community-based surveys were conducted in eight villages of Maridi and Amadi States. Consenting PWE were identified via a door-to-door approach, and perceived stigma was assessed using the validated Kilifi stigma scale. Additional data about household income, as well as epilepsy-related direct and indirect costs were collected. RESULTS: 239 PWE were recruited (95 from Maridi, 144 from Amadi). Stigma scores were higher in Maridi compared to Amadi (mean scores: 13.9 vs 6.5, p < 0.001). Mean weighted epilepsy costs per month in Maridi (38.4 USD) were double those observed in Amadi (17.6 USD). The main epilepsy-related expenditure was the purchase of anti-epileptic drugs (AED). Stigma scores correlated with epilepsy cost (Spearman-rho = 0.24, p < 0.001) and were positively associated with traditional medicine use (regression estimate = 1.9; p = 0.027). CONCLUSION: In rural South Sudan, PWE and their families often experienced stigma from the community. Higher perceived stigma was associated with traditional medicine use, which increased the overall cost of epilepsy management. Demystifying epilepsy and making AED more accessible would improve the quality of life of PWE and their families, and reduce the economic burden of epilepsy.