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 Aciro14 June 2026Acholi sub-region6 min read

A hospital corridor in northern Uganda where epilepsy and nodding syndrome clinics are held — 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.

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.

Sources & further reading

Ministry of Health Uganda - Government of Uganda
Epilepsy fact sheet - World Health Organization
Daily Monitor - Nation Media Group

Betty Aciro

Health Correspondent, Gulu Bureau

Betty Aciro covers maternal health, disability and long-term care across the Acholi sub-region and northern Uganda.

Maternal health
Disability and care
Northern Uganda health services

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