Forgotten children of Acholi: Nodding Syndrome patients languish amidst clinic closure

A medical facility built to serve nodding syndrome patients in the Acholi sub-region sits idle for two years, a stark symbol of the struggles these families face. With over 2,000 patients in desperate need of care, Acholi leaders are urging the Ugandan Ministry of Health to act swiftly.

"The nodding children," laments Fr. Charles Onen, the Pece-Laroo MP, "are the forgotten children of this country."

In Awere village, Odek subcounty, Omoro district, the shuttered clinic stands as a cruel reminder of unfulfilled promises.

Okello Douglas Peter Okao, Omoro's LC5 Chairperson, fears the delay in funding is costing lives. "Three more children have died," he reveals, "The centre is shut due to lack of government funding. I appeal to the Ministry of Health and Parliament to reopen the nodding syndrome centre and support these families."

Omoro currently grapples with 318 cases, which healthcare officials suspect may include misdiagnosed epilepsy. "Reopening the centre would allow closer monitoring," says Assistant District Health Officer, Ongom Robert.

While the government supplies monthly medication, local leaders demand that patients of Nodding disease be given priority.

Onen emphasises the need for compensation: "Most parents have abandoned these children. The government should offer compensation for those who died under its watch." MP Okot Amos echoes this sentiment, questioning the government's inaction: "Why build a health centre and rehabilitation unit then leave it unused? Why withhold medication and specialists?"

Another legislator from the region, Gilbert Olanya, who visited Pader families last week, believes tackling the root cause holds the key to resolving the Nodding disease problem once and for all.

"The situation is alarming! We need to find the source of this disease."

Omoro district has allocated land for a permanent health centre dedicated to nodding syndrome patients. "The last funding we received as a district was in 2020/21," explains Chairperson Okao, "but we're determined to upgrade this into a fully functional health centre III."

In 2018, Northern Uganda recorded 2,143 cases, concentrated in Pader (806), Kitgum (544), Lamwo (339), Gulu (323), Omoro (323), Amuru (58), and Lira (13). Sadly, over 500 deaths have been reported since 2007.