KITGUM, UGANDA — Betty, 22, sits on the ground outside her home eating a mango. She chews the fruit with difficulty; her tongue has become heavy after years of constant biting. A group of children runs and plays a few feet away. Betty smiles and gestures at them. The children smile back and try to make conversation from a distance, but none approach her as she sits in soiled clothes.
Betty’s father and part-time caretaker, Simon Ankara, says she was a happy, talkative child until the age of 6. One day, he noticed she was nodding her head continuously, and over time, she began experiencing seizures and difficulty eating. At the hospital, Betty, who, like other sources with nodding syndrome in this article, is not being identified by her full name for fear of stigmatization, was diagnosed with nodding syndrome. The news saddened Ankara, as he knew it wouldn’t be easy on his child or the family.
A study on nodding syndrome by researchers at the Academic Medical Centre at the University of Amsterdam describes it as “a mysterious tropical disorder characterized by head nodding, seizures, cognitive and motor decline, wasting, and stunting.” The disease was first documented in Tanzania in the 1960s, in South Sudan in the 1990s and in Uganda in 2007. An estimated 10,000 children have been affected in Tanzania, Uganda and South Sudan. Uganda had an estimated 6,000 cases from 2008 to 2022. No cure exists for nodding syndrome, and the main mode of treatment is limited to anticonvulsants to improve quality of life.
Due to funding challenges, the only two nodding syndrome centers in northern Uganda — Odek and Tumangu — closed in 2017, leaving thousands of patients like Betty under the care of their families, with no specialized treatment or rehabilitation. Of Uganda’s estimated 6,000 nodding syndrome cases, 5,321 are in the northern Ugandan districts of Kitgum, Pader, Lamwo, Omoro and Amuru. The Tumangu treatment center was in Kitgum, while the Odek treatment center was in Omoro district.
Patricia Lindrio, GPJ Uganda
Richard Okema, a village health team volunteer who coordinates the nodding syndrome program in Labongo Amida village, Kitgum district, says there have been high levels of neglect in many instances due to a lack of specialized care for patients. He says some patients have relapsed due to the difficulty of accessing lifesaving medications at health centers far from where they live. Additionally, there has been a rise in sexual abuse and other violations, such as subjecting patients to deplorable living conditions.
Okema says he attended up to five cases daily when the Tumangu center was open, but since its closure, he handles eight to 15 cases daily. “There is an extremely high level of neglect and abuse like rape, which is increasing the burden of caring for these children. It is better if the acute cases are removed from the community, and I can handle the mild ones,” he says.
In July 2022, Lillian Aber, the member of Parliament for Kitgum, tabled a motion seeking a resolution on the nodding syndrome situation in northern Uganda. Anthony Akol, a parliamentarian from Kilak North constituency, said at the time that based on a visit to affected areas, around 10% of those living with the disease in Uganda had been sexually abused, with 85% of those raped becoming pregnant. Sixty-three percent of those with nodding syndrome in the five most affected districts are female.
There is, however, a ray of hope. In December 2022, the Archbishop John Baptist Odama Care Centre, Kitgum opened. The center aims to provide treatment and rehabilitation for the most severe nodding syndrome cases and, one year on, has given respite to many patients, including those who have been abandoned by their families. Currently, the center houses seven girls and has a team of four volunteer staff members, including a nurse and three caregivers. It also has a separate wing for boys. At full capacity, the center could house 200 patients. Through volunteer outreach services, the center also reaches 10 to 15 patients a week.
What causes nodding syndrome?
According to a 2021 study published in the International Journal of Infectious Diseases, there is no definitive cause of nodding syndrome, but many studies note it may be caused by a neurotropic virus transmitted by blackflies. Other potential causes include mycotoxins, diet, post-traumatic stress disorder and pediatric catatonia — a behavioral syndrome marked by an inability to move normally.
Locals have speculated about the cause of nodding syndrome. The theories include an experiment gone awry; the contamination of relief food with chemical preservatives; the lingering impact of wartime exposure to ammunition; psychological repercussions of the region’s violent conflict; the absence of ancestral ceremonies; vengeful spirits; or even a deliberate effort to inflict harm upon the Acholi population, according to a 2020 study published by Afrika Focus, a multidisciplinary journal.
The opening of the Archbishop John Baptist Odama Care Centre, Kitgum
Moved by what he saw when he visited those living with the disease after the closure of the two specialized centers, Anthony Nyeko, a priest, established AJBOCCK in December 2022.
“I started this center because, during community work, I encountered children with the disease who were being treated inhumanely. They were tied with a rope for their own safety, left unfed, living in extreme filth, malnourished and eating their own feces,” Nyeko says.
He says that in some cases, the circumstances were so dire that parents expressed a preference for their children to die.
The center is, however, constrained by limited human resources and funding challenges. For now, it can only serve the most vulnerable patients and 10 to 15 patients a week through their volunteer outreach services in the community.
Thomas Odong Kara talks about the challenges of raising a child with nodding syndrome. “I wish he could be admitted to the care center because looking after him is difficult. I am certain he will receive the best care rather than staying at home, where he is constantly abused,” he says of Justine, his 17-year-old son. It saddens Kara to see his son being bullied and verbally abused in the community. The family has to limit his movement for safety.
The importance of specialized care for nodding syndrome
Dr. Henry Okello Otto, the district health officer for Kitgum district, says the closures of the Odek and Tumangu centers increased the burden of caring for patients at a community level.
The major impact of closing the centers has been on the quality of care that those with nodding syndrome receive. The majority can no longer access the treatment or quality of care they were accustomed to.
“The neglected cases at the community level are unacceptable. The families have given up on these children. And while we commend the government with support on medicine, the psychosocial aspect needs to be attended to seriously because it forms a big part of the burden,” Otto says.
When Betty was diagnosed in 2008, she received some care at Kitgum General Hospital, which led to an improvement in her health. After that, she received regular treatment at the Tumangu center. But since its closure, Betty has primarily received care at home.
“There have been some challenges, especially when we run out of medicine. She becomes violent, and often we must tie her up and let her sleep alone. However, when she is sedated, we can sleep in the same house,” Ankara says.
Otto says there have been no new cases in Kitgum since 2022, which currently has 544 cases, but village health teams have raised warnings, two of which were related to nodding syndrome patients whose living conditions were deplorable.
Funding for nodding syndrome
Limited funding for nodding syndrome has affected the operation of the care centers established to provide nutrition, medication and therapy for children with the disease.
Micheal Oketch, the nodding syndrome focal person for Kitgum district, says the last time they received funding to support nodding syndrome was in 2018. “Kitgum district got 237 million out of the 1.2 billion [Ugandan shillings] given to the whole region,” he says. Oketch says nodding syndrome has been forgotten by both the local and international community and is only discussed during campaign season. “We have been suffering and asking for support but in vain. We require a minimum of 40 million Ugandan shillings per year to sustain outreach programs.”
Dr. Alfred Mubangizi, acting assistant commissioner for vector borne and neglected tropical diseases at the Ministry of Health, says mismanagement of funds from 2018 is at the center of the nodding syndrome funding crisis. He says the ministry is doing its part by providing medication but describes it as a multisectoral problem.
Patricia Lindrio, GPJ Uganda
“The money sent was misused. It was used to buy mattresses, maize flour and rice. Ministry of Health has done its part and has advised the chief administrative officer to budget for nodding syndrome, but they have never requested the money and it’s not known why,” he says. He believes the silence is due to the inability to account for misused funds.
Godfrey Onzima, a parliamentarian from Aringa North constituency, says that in 2018, the “government had advanced 73 million [shillings], but then there was a challenge, as this money was not accounted for.” He says much of the money went to allowances, facilitation and coordination, when some of it was meant for food, as nodding syndrome is associated with malnutrition.
Inside the center
Salume Aber, a registered nurse who works at AJBOCCK, says many of the children they initially received had severe intellectual disabilities and lacked basic social needs due to neglect.
“When we started managing the symptoms, the quality of life improved and would have been even better if we had more experienced staff,” she says.
After rehabilitation, some patients graduate from medication, Aber says. “It is possible for nodding syndrome patients to live a productive life. Some have completed school, are working, married and living happy lives.”
The disease is treated as epilepsy to manage mental symptoms, while both physical and mental therapy improve patients’ quality of life.
Five studies have found that the use of anticonvulsant medications, like phenobarbitone, carbamazepine, sodium valproate and phenytoin, resulted in a 70% decrease in seizure frequency among nodding syndrome patients, according to a 2021 meta-analysis published in Tropical Medicine and Infectious Disease, an international journal. The anticonvulsant medicines were even able to completely eliminate seizures in 25% of cases. Anticonvulsants were also found to improve basic self-care in 80% of cases, behavior in 59% of cases, and school attendance in 40% of cases, promoting more independence for patients.
Proscovia Anek, 14, experienced an onset of symptoms when she was just 1 year old.
In January, she arrived at AJBOCCK in a severely malnourished state, unable to talk or walk and lacking basic life skills. “After managing her symptoms, she gained weight, regained the ability to communicate, and acquired some life skills such as washing dishes,” Aber says.
Otto commends Nyeko for stepping in when no one could.
“He needs to be supported. The children under Nyeko’s care have shown significant improvement since they arrived. This shows that institutional management is preferable to the community due to the high level of neglect at home,” Otto says. “We request the government to train staff and revive the Tumangu nodding syndrome care center.”
Patricia Lindrio is a Global Press Journal reporter based in Kampala, Uganda.