The Enigmatic Nodding Syndrome Outbreak in Northern Uganda: An analysis of the Disease Burden and National Response Strategies

Abstract

To date, the cause of nodding syndrome (NS) remains unknown; however, efforts continue to establish risk factors and optimal symptomatic treatments. We documented the burden and national response strategies including involvement of key stakeholders in the management of the NS epidemic in order to inform future interventions against epidemics of undetermined aetiology. Data were collected through semi-structured interviews with selected leaders in the affected districts and at the Ministry of Health, and through review of documents. We participated in and analysed the proceedings of the first international scientific conference on NS held in Kampala in August 2012. We then analysed the chronology of the NS notification and the steps undertaken in the response plan. Over 3000 children have been affected by NS in northern Uganda; with an estimated case fatality of 6.7%. The first cases of NS were reported in 1997 in internally displaced people’s camps in Kitgum district; however, response efforts by the Ministry of Health and partners towards understanding the disorder and establish management only commenced in 2009. Key strategies in response to the NS epidemic have included formation of a national and district task forces, development of training manual on NS and training of primary healthcare professionals on case diagnosis and clinical management, establishment of treatment and rehabilitation centres, surveillance and promotion of researches to further inform management of the syndrome.