Nodding Syndrome Survivors Are Now Adults, and the Care Plan Stopped at Childhood
Families in Acholi are caring for grown children with severe disability, on a support system designed for a paediatric emergency.
By Betty Aciro..Acholi sub-region.6 min read
Acholi sub-region. 14 June 2026.
AccountabilityPublic Health
The outbreak that drew international attention has receded from the headlines. The affected cohort has not receded from their households.
Caregivers are ageing
Parents who began caring for a seizing child fifteen years ago are now caring for an adult with epilepsy, cognitive impairment and no independent income, and the parents themselves are older and poorer.
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People ask what happened to those children. They grew up. Nobody planned for that.
Caregiver, Acholi sub-region
Clinicians want anticonvulsant supply guaranteed at health centre level and a disability grant that recognises full-time caregiving as the labour it is.
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A cohort that outgrew the programme designed for it
The nodding syndrome response in Acholi was built around paediatric case management during the height of the outbreak, with treatment centres, feeding support and school-based interventions designed for children. Survivors from that cohort are now adults, and the support architecture built for them has not been much redesigned for adult, long-term disability care.
Disability support grants that exist nationally are not specifically tailored to the demands of full-time caregiving for an adult with severe epilepsy and cognitive impairment. Caregivers, most of them now ageing parents, say the grant amounts have not kept pace with either inflation or the intensity of care needed.
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I am tired in a way that has nothing to do with age. I have been doing this since he was a small boy, and he is a grown man now.
Mother of a nodding syndrome survivor, Acholi sub-region
Anticonvulsant supply at health centre level is still inconsistent in several districts, according to clinicians, forcing families to travel to regional facilities for refills, a burden that falls hardest on caregivers who are themselves ageing and less able to make the journey.
Advocacy groups in the sub-region are pushing for a distinct adult disability care policy that recognises this cohort specifically, arguing that folding them into generic disability services underestimates both the severity of their needs and the toll on caregivers who have carried the burden largely without institutional support for over a decade.
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