Govt moots fresh plot to tackle nodding disease

Patients suffering from the Nodding disease attend a meeting with Kitgum leaders at Tumangu Treatment Centre in 2022. PHOTO/TOBBIAS JOLLY OWINY

What you need to know:

  • Nodding syndrome is a mysterious illness that affects the brain and central nervous system of children, primarily between the ages of five and 15.
  • The disease that mentally and physically retards children has lead to rejection and other forms of child abuse such as defilement.

When 23-year-old Solomon Odoch asked for permission from her mother to go and ease himself, Ms Esther Akwero nodded in approval.

The duo were in their cassava garden at Lukwo-Ojur Village, Lagile Parish, Awere Sub-county, Pader District in September 2019.

In the hot mid-morning sunshine, Odoch, a severely-ill patient with nodding syndrome, staggered and slowly disappeared from her mother’s sight.

While she hoped her son would return to her company, as usual, Odoch had made a walk of no return.

Thirty minutes later, Odoch’s delayed return attracted Ms Akwero’s suspicion who dashed out to check on him. She could only discover his son dead in their dilapidated grass-thatched kitchen.

According to Ms Akwero, he helplessly fell on a boiling pot of beans that she had set on fire for their lunch meal when he convulsed.

She said while her son lived with the disease for 13 years until his demise, the memory of the incident has since haunted her.  “It is difficult to forget that incident three years down the road,” Ms Akwero said.

This newspaper has learnt that the government is mooting a fresh approach to rid the region of the disease.

The government plans to review the status and management of children with nodding disease syndrome to come up with a lasting solution.

Ms Grace Freedom Kwiyocwiny, the State minister for Northern Uganda, said the ministry is embarking on research to establish the exact number of people affected, the areas they live and the extent the disease has impacted the lives of the families in the region.

“This research will take about two weeks in affected districts. This will help us know the extent of the problem then we will present the findings to Cabinet to act on the developed strategy to eliminate nodding disease syndrome once and for all,” she said at the weekend

Ms Kwiyocwiny did not give the exact date on when the research would start. The study, however, will be carried out by CTI Africa.

While meeting Acholi leaders at Gulu University in November, Mr Gadi Yerushalmi, the CTI Africa chief of operations, said they were going to conduct ethnographic and quantitative research that will give accurate results that will be used for proper action.

Plight of victims

Leaders from the northern region say children suffering from the disease go without food while medical facilities across the district lack basic medication.

Mr Raymond Oroma, the chairperson of Lukwo-Ojur Village, Lagile Parish, Awere Sub-County, said: “These children have not been doing well recently, better measures are still lacking in response to their situation.”

According to him, defilement has been the worst form of child abuse perpetrated on children.

Treatment centres

The key treatment centres in the region have also closed down due to a lack of funds to run the centres, for example, Odek Treatment Centre in Odek Sub-county, Omoro District and Tumanguu Treatment Centre in Labongo Akwang Sub-county, Kitgum District.

In Kitgum, the recently opened Archbishop John Baptist Odama Treatment Centre can only accommodate six female patients at a time, with minimal capacity and financing to run the facility.

While delivering President Museveni’s 2014 pledge of 208 oxen to families affected by the Nodding Syndrome in the Pader last week, district leaders asked the State House Comptroller, Ms Jane Barekye, to upgrade Awere Health Centre III to a Health Centre IV status to enable it to expand its capacity to handle the disease.

Mr Robert Adebuason, the Pader Chief Administrative Officer, said 548 households have one or more Nodding disease patient(s). He also stated that the district does not have a proper health facility in place to handle and treat severe cases.

Parents on the spot

Dr Benson Oyoo, the Pader District Health Officer, said parents continue to abandon sick patients, especially children with a belief that they are cursed and condemned.

Besides the isolation and rejection, more than 110 children have been birth by female victims across Kitgum as a result of rape.

In October, authorities in the district appealed to the government to intervene and support more than 111 children born by female survivors (patients) of Nodding Syndrome disease in Kitgum District.

“Their parents and grandparents cannot care and send them to school while many of these children reach school-going age. In many places here, they are disowning them, and that is disastrous,” Mr Joe Otto, the coordinator of Nodding Syndrome in Labongo-Akwang and Labongo-Amida Sub-counties in Kitgum, said.

The district has 85 mothers who are patients suffering from the disease and have 111 children.

Affected people

According to the Health Ministry, there are 2,143 patients affected by the epidemic in northern Uganda, with Pader District having 806, Kitgum (544), Lamwo (339), Gulu (58) and Lira (13).

In the Acholi Sub-region, an estimated 600 patients continue to live in critical conditions that require urgent medical care. Of the 600, Kitgum has 92, Pader (431) Omoro (42) Amuru (8), and Lamwo (27) that are critically ill.

About the disease

In 2019, Ministry of Health researchers found that the mysterious nodding disease resulted from Onchocerca Volvulus (OV), a parasite that causes nodding in children and the loss of hundreds of lives in the Acholi Sub-region.

The researchers led by Dr Richard Idro said the brain damage in victims is permanent and requires medication for life.

 The report also revealed that the brains of victims with severe conditions became smaller (generalised) with cerebral atrophy (thinning) and degenerated like in the elderly with tau-Protein deposits (tauopathy).

Nodding syndrome is a mysterious illness that affects the brain and central nervous system of children, primarily between the ages of five and 15.

The children nod off their heads coupled with seizures and in most cases, they lose contact with the surrounding environment.

The disease causes increased diminishment in mental capacity and over time, many children develop severe growth retardation.          

A child who is 12 or 13 will appear to be six or eight years old.