A case for nodding syndrome/disease as a disability rights issue: a focus on Kitgum District in Northern Uganda

Abstract

Nodding syndrome (NS) is a disease affecting children between the age of 5 and 15 years in the northern part of Uganda, specifically in Acholi sub-region. This disease has been reported in the districts of Pader, Kitgum, Lamwo, Gulu, Amuru, Oyam and Lira. However, for the purposes of this dissertation, the study area is Kitgum. Nodding syndrome has been described as a nervous condition that affects the brain and the nervous system of its victims and causes abnormal brain activity that result in a brief lapse in the neck muscle tone, causing the head to nod forwards. The disease also results in seizures, leaving the victims vulnerable and disabled. NS is a neglected disease since it affects the poor and marginalized groups living in low-income settings. little global attention. Studies have reported numerous causes of NS and long term effects of the wars in the northern region being one of the major causes. This research aims at examining the disability rights of the victims of NS in Kitgum district. It examines the effectiveness of Uganda’s legal and policy framework in responding to the NS. The study employs a qualitative methodology including desk review and empirical findings as deduced from Key Informant Interviews held with a number of stakeholders.