By Olum Douglas
Gloria Laker, a fourth-year Bachelor of Laws student at Uganda Christian University (UCU), met her first nodding syndrome patient when visiting an ailing grandfather. It was a Thursday morning in November 2019 at Gulu Regional Referral Hospital in northern Uganda.
As she walked past the women’s ward, Laker saw a teenage patient with severe burns on much of her upper body. The girl, laying alone on the bare floor, was jerking and breathing heavily with sticky saliva flowing profusely out of her mouth. She appeared malnourished with a protruding belly.
Concerned about the girl’s condition with seemingly solitary agony, Laker made inquiries and learned the girl was in a seizure from a debilitating neurological disease called nodding syndrome. During one such seizure prior to hospitalization, the girl had been raped and impregnated. Laker’s subsequent research revealed the tragic helplessness of many children suffering from the condition in northern Uganda. As of December 2022, the Uganda Ministry of Health reported at least 1,700 children from northern Uganda’s Pader, Amuru, Gulu, Kitgum and Omoro districts have been diagnosed.
Speaking in May 2023, Laker recalled the 2019 experience: “Nothing about this girl was pleasing. The skin had peeled, leaving red wounds all over. I am told she had fallen in hot oil. I developed goose bumps. I promised myself that if I can only help one person in such a situation, if I can only help 10 percent of those victims, if I can only help a few and instill in them hope and help them carry forward, I would be fulfilled.”
Sadly, Laker learned later that the girl died in childbirth, leaving an orphaned daughter.
Laker’s compassionate exploration has since led her into the lives of several children and families affected by this mysterious, sparsely researched disease. Among them was Grace Adero, a mother of seven children suffering from nodding syndrome. Adero says she has had a life of being forced to either chain or lock her children in the house whenever she steps out to the garden, market or even to fetch water.
“Many of the victims have been bitten by snakes and killed as they wander about, burned in boiling water or cooking oil, drowned and died in water bodies or disappeared without traces,” Adero told Laker during a visit to her home in Anaggura village in Pader district, “We now tie them up or lock them inside to protect them from wandering and dying in such circumstances.”
Laker’s first-hand encounters with victims opened her eyes to their discrimination as well as inadequate, ill-informed evidence of causes and health care solutions. Some label them cursed.
Nodding Syndrome is a debilitating neurological disease that manifests in children and youth ages of 3 to 18. The disease, occurring in clusters in sub-Saharan Africa, manifests through severe symptoms such as periodic head nodding and violent epileptic seizures, dizziness, excessive sleepiness, stunted physical growth, loss of attention, delayed puberty and depression. It is not curable but treatable with medical strategies similar to that for epilepsy.
While the origin of the disease still remains a mystery, these are three research conjectures:
- Its origin is traced to Mexico as far back as the 1930s, then in Liberia, and later in South Sudan and northern Uganda.
- It was first detected in Tanzania, an East African country south of Uganda, in the 1960s.
- It was discovered in the 1970s when river blindness (O. volvulus infection from a parasitic roundworm) was associated with visual impairment, severe rashes, and, rarely, swollen lymph nodes and with these victims possessing symptoms similar to nodding.
In northern Uganda, children have been identified as affected by the disease over the last 20 years. Many have succumbed to it due to lack of proper treatment and limited government interventions to address the problem.
Suzanne Gazda, a Texas-based neurologist, who started and ran a non-profit: Hope for Humans, which focused on providing care services for the nodding syndrome patients in northern Uganda between 2012 and 2017, is quoted by UNDARK, an online magazine, as saying that she was not optimistic about the future of the children.
Reflecting on the apparent hopelessness of the situation and what she described as “piecemeal advancements in the scientific understanding of the disease,” Gazda noted that: “We’ve got to help these children that have been abandoned and essentially left to suffer and die.”
In 2023, Laker, 22, is carrying part of that torch by leading the non-profit Atwero Child Foundation alongside four other colleagues to support the nodding syndrome-affected children and their families. Through the initiative, she has fed, clothed and spoken hope to many hearts and lives.
Coming from a humble background and being a survivor of sexual exploitation, Laker says she is especially appalled by the situation of the girls she has met, and is challenged to act and change their circumstances.
In June 2022, her organization conducted a run dubbed; “Don’t Touch Me,” to bring to light the plight of females victimized by nodding syndrome and sexual abuse without justice recourse. In November 2022, the organization spearheaded a stakeholder engagement that attracted politicians, cultural and religious leaders and others to learn about and connect with the nodding syndrome victims and their families.
“The dialogue gave the victims and their families the platform to share their pains and experiences – something that was for long ignored as leaders would only go to make promises they never lived to fulfill to the people,” Laker said.
In December 2022, Laker’s organization collected used clothing and food, which she distributed to the victims and their families, feeding over 1,000 people in what was dubbed the “Christmas Love Giveaway.”
Atwero Child Foundation also conducted a legal support outreach in which at around 90 law students from UCU and other universities reached out to the affected families and counseled them on how they could seek legal redress, especially for the sexually abused daughters.
“It was sad to learn that, even when they knew the boys and men who raped their daughters, many of the families did not know that they could pursue them through legal means and get justice served to the victims,” Laker said.
With no specialized hospital care available for the nodding syndrome victims, Laker noted that oftentimes medical workers and other patients at the public hospitals look at the afflicted as trouble-makers. Among the objectives of Atwero Child Foundation is to partner with like-minded organizations and health researchers to set up a specialized hospital for the victims and for informed medical workers and for deeper research and understanding of the disease.
“Sometimes I get overwhelmed and I feel like I should give up,” Laker said. “But I also think quitting now will be letting the helpless children and families down.”
(Douglas Olum, author of this story, is pursuing a master’s degree from the UCU School of Journalism, Media and Communication)
