Stigma and epilepsy in onchocerciasisendemic regions in Africa:a review and recommendations from the onchocerciasisassociated epilepsy working group

Background:In onchocerciasis-endemic areas,particularly in those with a sub-optimal onchocerciasis control programme,a high prevalence of epilepsy is observed.Both onchocerciasis and epilepsy are stigmatizing conditions.The first international workshop on onchocerciasis-associated epilepsy(OAE)was held in Antwerp,Belgium(12-14 October 2017)and during this meeting,an OAE alliance was established.In this paper,we review what is known about epilepsy-associated stigma in onchocerciasis-endemic regions,and present the recommendations of the OAE alliance working group on stigma.Main body:For this scoping review,literature searches were performed on the electronic databases PubMed,Scopus and Science Direct using the search terms"epilepsy AND onchocerciasis AND stigma".Hand searches were also undertaken using Google Scholar,and in total seven papers were identified that addressed epilepsy-related stigma in an onchocercisasis-endemic area.Due to the limited number of published research papers on epilepsyassociated stigma in onchocerciasis-endemic areas,other relevant literature that describes important aspects related to stigma is discussed.The thematic presentation of this scoping review follows key insights on the barriers to alleviating the social consequences of stigma in highly affected onchocerciasis-endemic areas,which were established by experts during the working group on stigma and discrimination at the first international workshop on OAE.These themes are:knowledge gaps,perceived disease aetiology,access to education,marriage restrictions,psycho-social well-being,burden on the care-giver and treatment seeking behaviour.Based on the literature and expert discussions during the OAE working group on stigma,this paper describes important issues regarding epilepsy-related stigma in onchocerciasis-endemic regions and recommends interventions that are needed to reduce stigma and discrimination for the improvement of the psycho-social well-being of persons with epilepsy.Conclusions:Educating healthcare workers and communities about OAE,strengthening onchocerciasis elimination programs,decreasing the anti-epileptic treatment gap,improving the care of epilepsy-related injuries,and prioritising epilepsy research is the way forward to decreasing the stigma associated with epilepsy in onchocerciasis-endemic regions.

Epidemiology of onchocerciasis-associated epilepsy in the Mbam and Sanaga river valleys of Cameroon:impact of more than 13 years of ivermectin

Background:A high epilepsy prevalence has been reported in several onchocerciasis-endemic villages along the Mbam and Sanaga river valleys in Cameroon,including Bilomo and Kelleng.We sought to determine the prevalence of epilepsy in these two villages following more than 13 years of community-directed treatment with ivermectin(CDTI).Methods:Door-to-door surveys were performed on the entire resident population in the villages in August 2017 and January 2018.Epilepsy was diagnosed using a 2-step approach:administration of a standardized 5-item questionnaire followed by confirmation by a neurologist.Previously published diagnostic criteria for onchocerciasis-associated epilepsy(OAE)were used.Ov16 serology was done for children aged 7-10 years to assess onchocerciasis transmission.Findings were compared with previous data from these two villages.Results:A total of 1525 individuals(1321 in Bilomo and 204 in Kelleng)in 233 households were surveyed in both villages.The crude prevalence of epilepsy was 4.6%in Bilomo(2017)and 7.8%in Kelleng(2018),including 12(15.6%of cases)persons with epilepsy(PWE)with nodding seizures.The age and sex-standardized prevalence in Kelleng decreased from 13.5%in 2004 to 9.3%in 2018(P<0.001).The median age of PWE shifted from 17(IQR:12-22)years to 24(IQR:20-30)years in Bilomo(P<0.001);and slightly from 24(IQR:14-34)years to 28(IQR:21.25-36.75)years in Kelleng(P=0.112).Furthermore,47.6%of all tested children between 7 and 10 years had Ov16 antibodies.Conclusions:There is a decrease in epilepsy prevalence after 13 years and more of CDTI in both villages.The age-shift observed in PWE suggests that ivermectin may prevent OAE in younger residents.Ov16 seropositivity in children indicates ongoing onchocerciasis transmission possibly due to suboptimal control measures.Our findings support the existence of OAE in Cameroon and highlight the need to strengthen onchocerciasis elimination programs.

Report of the first international workshop on onchocerciasis-associated epilepsy

Background:Recently,several epidemiological studies performed in Onchocerca volvulus-endemic regions have suggested that onchocerciasis-associated epilepsy(OAE)may constitute an important but neglected public health problem in many countries where onchocerciasis is still endemic.Main text:On October 12-14th 2017,the first international workshop on onchocerciasis-associated epilepsy(OAE)was held in Antwerp,Belgium.The workshop was attended by 79 participants from 20 different countries.Recent research findings strongly suggest that O.volvulus is an important contributor to epilepsy,particularly in meso-and hyperendemic areas for onchocerciasis.Infection with O.volvulus is associated with a spectrum of epileptic seizures,mainly generalised tonic-clonic seizures but also atonic neck seizures(nodding),and stunted growth.OAE is characterised by an onset of seizures between the ages of 3-18 years.Multidisciplinary working groups discussed topics such as how to 1)strengthen the evidence for an association between onchocerciasis and epilepsy,2)determine the burden of disease caused by OAE,3)prevent OAE,4)improve the treatment/care for persons with OAE and affected families,5)identify the pathophysiological mechanism of OAE,and 6)deal with misconceptions,stigma,discrimination and gender violence associated with OAE.An OAE Alliance was created to increase awareness about OAE and its public health importance,stimulate research and disseminate research findings,and create partnerships between OAE researchers,communities,advocacy groups,ministries of health,non-governmental organisations,the pharmaceutical industry and funding organizations.Conclusions:Although the exact pathophysiological mechanism underlying OAE remains unknown,there is increasing evidence that by controlling and eliminating onchocerciasis,OAE will also disappear.Therefore,OAE constitutes an additional argument for strengthening onchocerciasis elimination efforts.Given the high numbers of people with epilepsy in O.volvulus-endemic regions,more advocacy is urgently needed to provide anti-epileptic treatment to improve the quality of life of these individuals and their families.