High prevalence of epilepsy in an onchocerciasis-endemic area in Mvolo County, South Sudan: A door-to-door survey

In June 2020, a door-to-door household survey was conducted in Mvolo County, an onchocerciasis-endemic area in South Sudan. A total of 2357 households containing 15,699 individuals agreed to participate in the study. Of these, 5046 (32.1%, 95% CI: 31.4–32.9%) had skin itching and 445 (2.8%, 95% CI: 2.6–3.1%) were blind. An epilepsy screening questionnaire identified 813 (5.1%) persons suspected of having epilepsy. Of them, 804 (98.9%) were seen by a medical doctor, and in 798 (98.1%) the diagnosis of epilepsy was confirmed. The overall epilepsy prevalence was 50.8/1000 (95% CI: 47.6–54.4/1000), while the prevalence of nodding syndrome was 22.4/1000 (95% CI: 20.1–24.9/1000). Younger age, being male, skin itching, blindness, and living in a neighbourhood or village close to the Naam River were risk factors for epilepsy. The annual incidence of epilepsy was 82.8/100,000 (95% CI: 44.1–141.6/100,000). Among children 7–9 years old without epilepsy, 34% were Ov16 seropositive, suggesting high ongoing Onchocerca volvulus transmission, but only 41.9% of them took ivermectin during the last mass distribution. In conclusion, a high prevalence and incidence of epilepsy was observed in Mvolo, South Sudan. Strengthening of the onchocerciasis elimination programme is urgently needed in order to prevent epilepsy in this region

From river blindness to river epilepsy: Implications for onchocerciasis elimination programmes

Current onchocerciasis elimination programmes do not include identification and management of onchocerciasis-associated epilepsy (OAE) in their strategies. Creating awareness about OAE will increase community-directed treatment with ivermectin (CDTI) adherence, particularly in areas of high prevalence, while motivating funders and stakeholders not to relent their efforts in the fight against onchocerciasis. Strengthening onchocerciasis elimination efforts should be prioritised wherever epilepsy prevalence is high in order to reduce OAE-related morbidity and mortality. In such areas, alternative treatment strategies including biannual CDTI, ground larviciding of blackfly breeding sites, and/or treatment with moxidectin should be considered. Addressing the OAE disease burden in these generally remote onchocerciasis-endemic regions confronted with poverty, weak healthcare infrastructures, and insecurity goes beyond current onchocerciasis elimination plans. New strategies with appropriate budgets are required. A morbidity management and disease prevention (MMDP) strategy, fully integrated into the health system, must be developed by multidisciplinary working groups involving neglected tropical disease (NTD) and epilepsy specialists, advocacy experts, and persons from affected communities. ‘River epilepsy’ needs to be urgently recognised and placed in the international development and NTD agendas

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

The prevalence of onchocerciasis-associated epilepsy in Mundri West and East Counties, South Sudan: A door-to-door survey

A two-phase survey of epilepsy was conducted in selected villages in Mundri West and East Counties (26 June–8 July, 2021), an onchocerciasis-endemic area in Western Equatoria State in South Sudan. In the first phase, households were visited by a trained research team to identify persons suspected to have epilepsy. In the second phase, persons suspected to have epilepsy were interviewed and examined by a clinician to confirm the diagnosis. A total of 364 households agreed to participate in the survey, amounting to 2588 individuals. The epilepsy screening questionnaire identified 91 (3.5%) persons with suspected epilepsy, of whom the diagnosis of epilepsy was confirmed by a clinician in 86 (94.5%). The overall prevalence of confirmed epilepsy was 3.3% (95% CI: 2.7–4.1%), and of nodding syndrome was 0.9% (95% CI: 0.6–1.4%). In 61 (16.8%) households there was at least one person with epilepsy. Only 1212 (46.9%) of 2583 people took ivermectin during the last distribution round in 2021. The annual epilepsy incidence was 77.3/100,000 (95% CI: 9.4–278.9/100,000) and the annual epilepsy mortality was 251.2/100,000 (95% CI: 133.8–428.7/100,000). In conclusion, a high prevalence and incidence of epilepsy was observed in villages in Mundri. Urgent action is needed to prevent children from developing onchocerciasis-associated epilepsy by strengthening the local onchocerciasis-elimination programme