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Background: Epilepsy remains a significant public health concern in Tanzania, with affected individuals enduring stigma, whether through actions or perceptions. Myths, misunderstandings, and misconceptions about epilepsy have persisted due to a multitude of factors. Here, we assessed attitudes and perceptions toward epilepsy in Mahenge. Methods: A cross-sectional study utilising a mixed-methods approach was undertaken in eight villages in the Ulanga district of Mahenge, integrating a semi-structured questionnaire and focus group discussions (FGDs). The questionnaire involved 778 community members, and 15 FGDs were conducted (seven groups with people with epilepsy and eight without). Descriptive statistics, chi-square, and logistic regression were used for quantitative analysis, while we used NVivo version 14 for thematic analysis of qualitative data. Results: Of 778 participants, over half were women (425, 54.6%) with a median age of 41 years (IQR: 30–55) and most had completed primary education (79.9%). The majority of participants were aware of epilepsy (96.8%), yet they displayed low knowledge (51%), negative attitudes (45.5%), and perceptions (42.1%) towards the disorder. A low level of understanding was significantly associated with negative attitudes (Adjusted Odds Ratio [AOR] = 1.89, 95%CI: 1.41–2.53) and perceptions (AOR = 3.22, 95%CI: 2.05–5.04) towards epilepsy. In the qualitative analysis, often hereditary factors and infections were named as causes of epilepsy, along with misconceptions involving witchcraft and divine punishment. There was also a misconception about the contagiousness of epilepsy. Traditional healers were often the initial point of treatment. Epilepsy-related stigma was evident, with individuals with epilepsy facing derogatory labels, social isolation, and barriers to education. Lastly, there was a lack of understanding regarding a possible association between epilepsy and onchocerciasis. Conclusions: Despite high awareness of epilepsy, there is insufficient understanding, negative attitudes, and perceptions, including misconceptions and stigma about this neurologic condition. Community-based education programmes are essential for promoting proper healthcare-seeking behaviour and dispelling myths. [ABSTRACT FROM AUTHOR]

Background: Nodding syndrome (NS) has been consistently associated with onchocerciasis. Nevertheless, a positive association between NS and a Mansonella perstans infection was found in South Sudan. We aimed to determine whether the latter parasite could be a risk factor for NS in Mahenge. Methods: Cases of epilepsy were identified in villages affected by NS in Mahenge, Tanzania, and matched with controls without epilepsy of the same sex, age and village. We examined blood films of cases and controls to identify M. perstans infections. The participants were also asked for sociodemographic and epilepsy information, examined for palpable onchocercal nodules and onchocerciasis-related skin lesions and tested for anti-Onchocerca volvulus antibodies (Ov16 IgG4) by ELISA. Clinical characteristics of cases and controls, O. volvulus exposure status and relevant sociodemographic variables were assessed by a conditional logistic regression model for NS and epilepsy status matched for age, sex and village. Results: A total of 113 epilepsy cases and 132 controls were enrolled, of which, respectively, 56 (49.6%) and 64 (48.5%) were men. The median age in cases and controls was 28.0 (IQR: 22.0–35.0) and 27.0 (IQR: 21.0–33.3) years. Of the persons with epilepsy, 43 (38.1%) met the probable NS criteria and 106 (93.8%) had onchocerciasis-associated epilepsy (OAE). M. perstans infection was absent in all participants, while Ov16 seroprevalence was positively associated with probable NS (odds ratio (OR): 5.05, 95%CI: 1.79–14.27) and overall epilepsy (OR: 2.03, 95%CI: 1–07–3.86). Moreover, onchocerciasis-related skin manifestations were only found in the cases (n = 7, p = 0.0040), including persons with probable NS (n = 4, p = 0.0033). Residing longer in the village and having a family history of seizures were positively correlated with Ov16 status and made persons at higher odds for epilepsy, including probable NS. Conclusion: In contrast to O. volvulus, M. perstans is most likely not endemic to Mahenge and, therefore, cannot be a co-factor for NS in the area. Hence, this filaria is unlikely to be the primary and sole causal factor in the development of NS. The main risk factor for NS remains onchocerciasis. Author summary: Nodding syndrome (NS) is a rare and severe form of epilepsy that mainly affects children. The syndrome has only been found in onchocerciasis-endemic areas, and epidemiological studies suggest that it may be one of the forms of onchocerciasis-associated epilepsy caused by the parasite Onchocerca volvulus. Nevertheless, other causes have been considered, such as an infection with Mansonella perstans. To identify a main causal factor for NS, it needs to be present in all sites where the syndrome is found. Hence, our team explored 113 people with epilepsy and 132 healthy controls in Mahenge, Tanzania, to determine if M. perstans could be behind the epidemic of NS in the area. Over a third of the epilepsy cases in the study met the criteria for probable NS. None of the participants was diagnosed with an M. perstans infection. However, those exposed to onchocerciasis and with onchocerciasis-associated skin lesions were more likely to have epilepsy, including probable NS. In conclusion, onchocerciasis remains the most likely main risk factor for NS. [ABSTRACT FROM AUTHOR]

Background: Epilepsy is not only one of the oldest known neurological disorder but also one of the most prevalent chronic brain disorder worldwide. The social pathology associated with epilepsy drives the people with epilepsy (PWE) and their families into the shadows and widens epilepsy treatment gap. How much the social aspects of epilepsy and epilepsy care has changed in rural African communities in the globalized world is yet to be fully elucidated. Objectives: This study aims to determine the level of knowledge and attitude towards epilepsy and the people living with epilepsy (PWE) by adult inhabitants of a rural southeastern Nigerian community. Methodology: This was a cross sectional door-to-door population survey. Interview on select aspects of knowledge and attitude to epilepsy was conducted using a pretested semi-structured questionnaire. Results: Three hundred and seven (90.3%) of the respondents reported awareness of epilepsy, 61(18%) had good knowledge on epilepsy but attitude towards epilepsy was negative. The key source of information on epilepsy for 133 (43.3%) respondents was health workers, while 125 (40.7%) reported that epilepsy was a medical disease. Associations existed between level of knowledge on epilepsy and gender (p=0.0023); marital status (p=0.0012) and educational attainment (p= 0.0476). Conclusions: Awareness of epilepsy though high among the rural inhabitants yet a wide gap still exist regarding the knowledge and attitude towards epilepsy. It is hoped that with adequate culturally appropriate educational programs, channelled through the media and health workers in rural communities the existing gap in knowledge and treatment will be bridged. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]