'There were moments we wished she could just die': the highly gendered burden of nodding syndrome in Northern Uganda

Julia Irani, Joseph Rujumba, Amos Deogratius Mwaka, Jesca Arach, Denis Lanyuru, Richard Idro, Robert Colebunders, Rene Gerrets, Koen Peeters Grietens, Sarah O'Neill

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Nodding Syndrome (NS) occurs within a wide spectrum of epilepsies seen in onchocerciasis endemic areas of sub-Saharan Africa. It has debilitating consequences on affected individuals and increases the socio-economic, physical and psychological burden on care-givers and their households, diminishing their standing within the community. Social science research on the disproportionate burden of the disease on females is limited. Based on ethnographic research over 3 years in northern Uganda, we explored the burden of being ill and care-giving for persons with NS from a gendered perspective. We found that NS-affected females were at greater risk of physical and psychological abuse, sexual violence, unwanted pregnancies, sexually transmitted infections and stigma, in a context of deteriorating socio-economic conditions. Primary care-givers of the NS-affected, mostly women, struggled to make ends meet and were subjected to stigma and abandonment. Targeted interventions, including legal protection for affected females, stigma reduction, and psycho-social and financial support are needed.

Original languageEnglish
Article number10497323221085941
JournalQualitative Health Research
Issue number10
Pages (from-to)1544-1556
Number of pages13
Publication statusPublished - 2022


  • Epilepsy
  • Female
  • Humans
  • Male
  • Nodding Syndrome/epidemiology
  • Onchocerciasis/epidemiology
  • Social Stigma
  • Uganda/epidemiology


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