Tthe other children run away in fear when the convulsions begin. Tabo took a long breath before falling unconscious to the ground, her whole body shaking. The 17-year-old’s mother, Penina Monyo Gulu Biro, gently holds the girl while the attack lasts.
A minute or two later, Tabo (pictured above) sits up again, tears rolling down her cheeks. “She cries because she is sad to be like this,” says Biro.
In 2016, Tabo was diagnosed with nodding syndrome, the neurological disorder that killed her 10-year-old sister, Nyibili.
Knik syndrome was first identified in the 1960s in Tanzania, when it was seen in South Sudan in the 1990s and in Uganda in 2007. In the past five years, cases have been reported in the Democratic Republic of the Congo, Central African Republic and Cameroon, according to Dr Gasim Abd-Elfarag, an expert on the disease which is a South Sudanese lead charity, Access for Humanity.
But South Sudan’s Western Equatoria state, where Tabo’s home town of Mvolo is located, has the highest incidence of nodding syndrome in the world, with more than 6,000 cases recorded at health facilities in four of the state’s 10 counties , according to Amref Health Africa, the aid organization leading the response in the country.
Amref is part of the Nodding Syndrome Alliance (NSA), a consortium of aid groups and universities established in 2019 that runs research programs and specialized clinics in the provinces of Maridi, Mundri West and Mundri East, which border Mvolo in the south. industry.
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Tabo Yowan, left, a 17-year-old who has nodding syndrome, with her mother, Penina Monyo Gulu Biro
There is no specialist clinic in Mvolo district, although the area is a hotbed of the disease, with 3,000 cases, according to Lexon Bira, a local coordinator for the Relief and Rehabilitation Commission, a government-run humanitarian agency. be managed.
Remote villages have little to no access to the anti-epileptic drugs that can help manage symptoms.
The cause of nodding syndrome is still unknown and no cure has been found for the disease, which affects children aged three and over and continues into adulthood. When it starts, nodding episodes are triggered by the sight of food and falling temperatures.
Without epilepsy drugs, the condition worsens, with seizures potentially causing accidents and even death. Long-term effects include brain damage, stunted growth and mental retardation.
Affected children often become socially isolated because they are kept away from gatherings. “Children with nodding syndrome face different types of stigma, mainly because there is a lack of understanding of the condition, where it comes from and how it is transmitted,” says Sophia Mohammed, South Sudan director for one of the NSA charities, Light for the World, which support disabled people and promote eye health.
“They often don’t eat with others,” she says. “They are usually kept out of school and those who do attend school are often asked to sit apart from the rest of the class.”
Lilian Sebit Doro’s daughter Grace died in 2019. “She died of malaria and chest pain,” says Lilian, who attributes her child’s death to nodding syndrome that weakened her body. Two of her three remaining children also have the disease.
Her daughter, Roda Taban, who is 25, can experience up to “12 seizures in one night”, so Lilian sleeps in the same room to ensure that Roda does not accidentally harm her baby when she starts having seizures.
Lilian’s 30-year-old son also has constant seizures and is almost blind due to onchocerciasis, known as river blindness, a disease caused by a parasitic worm transmitted by the bite of an infected black fly.
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Lilian Sebit Doro, holding her grandson, stands at the grave of her daughter Grace Taban, who died of malaria in 2019. Lilian attributes her death to nodding syndrome which left her too weak to fight it.
After losing her job as a cook for an international aid organization that closed its operations in Mvolo in 2022, Lilian could no longer afford epilepsy drugs. “I can’t say what causes this disease, whether it’s the black fly or the killing of family members,” she says, referring to local beliefs that nodding syndrome and epilepsy are a punishment for sharing food with someone who killed your family member without feeding. cleansing rituals.
Researchers have identified a link between nodding syndrome, exposure to black fly bites and onchocerciasis infection. The black fly breeds along fast-flowing rivers, such as the Mvolo River.
Stephen Jada, a doctor and researcher at Amref Health Africasays: “We noticed that among communities living near rivers, where onchocerciasis is very common, cases of epilepsy and nodding syndrome are more.
“The further you get from the river, the lower the number of cases. And when you go to villages where there is no river, where you don’t observe black fly bites, cases of nodding syndrome are rare, if not absent.”
Nodding syndrome is probably a form of “onchocerciasis-associated epilepsy”, says Jada, although he adds: “We don’t know how onchocerciasis can cause the disease.
“Tests have been carried out to see if the parasites reach the brain, or if they release a toxin that causes it, without success,” he adds. “It’s all still being investigated.”
Several other theories have emerged to explain the surge in nodding syndrome cases in the region. Spoiled food aid, chemical weapons that could have been used during the civil war and nutritional deficiencies were all investigated as possible causes, but “no conclusive results came out”, says Abd-Elfarag.
“It’s still a mysterious disease,” he says. “We are still unable to put the puzzle together and understand its real cause.”
Rresearchers turned their attention to intervention studies centered on the black fly. This includes slash-and-clear operations to get rid of the grass where the insect breeds. Campaigns to treat onchocerciasis with an anti-parasitic drug are now conducted twice a year by health authorities, after decades of hiatus due to the civil war and the years of instability that followed South Sudan’s independence 13 years ago.
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Benneth Bare, left, and Julius Sebit Emmanuel volunteer to catch blackflies for a research project on onchocerciasis
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Catch black flies, which carry the parasite responsible for onchocerciasis or ‘river blindness’. Researchers have identified a link between nodding syndrome, exposure to black fly bites and onchocerciasis infection
In northern Uganda, as well as more recently in the South Sudanese town of Maridi, another heavily affected area of Western Equatoria, such interventions are made a difference: the number of new cases of nodding syndrome fell when both the blackfly and onchocerciasis were eradicated.
A similar approach was introduced in Mvolo last year. Volunteers sit on rocks by the Mvolo River and spend days catching black flies and trapping them in tubes, recording the numbers collected every hour. The samples are then sent to the capital, Juba, and from May this year to the University of Antwerp for further analysis and to identify what percentage of black flies carry the parasite responsible for river blindness.
In Mundri, a more developed town 60 miles (100 km) south of Mvolo, the specialized clinic run by NSA has registered 1,500 patients since it opened in 2020. Providing free antiepileptic drugs has helped reduce the frequency of seizures and nodding episodes.
“We have recorded 25 deaths so far, but the majority are now living a better life – they can work or go back to school,” says Joseph Yoto, the clinic’s nurse.
At Mundri Adventiste primary school, only five of the 650 pupils are affected by nodding syndrome. “There are many more in the community, but parents still refuse to send them to school,” said Rebecca Aunty Ezbon, an education officer for the Sudan Evangelical Mission, which trains teachers on how to treat pupils with the condition.
Lukowe Christine Tina is one of the teachers. “I had that mentality – if I touch it [a pupil while they were convulsing]nod will be transferred to me,” she says.
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Negend Bouda, left, a pupil with nodding syndrome at Mundri Adventiste primary school, with her teacher Lukowe Christine Tina. Bouda is part of the nod syndrome alliance clinic and project, and was successful at school thanks to the support she received
She learned that the disease is not contagious, and was advised on the best way to respond during epileptic seizures. She noticed an improvement in those using medication provided by the clinic, and became convinced of the potential of her pupils with the condition.
“Some of them like playing music with traditional instruments, others like debate activities in English,” she says. “We need to find out where they are most comfortable expressing themselves and thriving in school.”
Nine Bouda (19) almost gave up school “because she felt scared and ashamed” after she had convulsions in class. But the teacher convinced her to return and talked to her classmates.
Lukowe says: “We had to give them awareness: not to run away from her, that this disease cannot affect someone just by associating with the person. So they understood. And she managed to pass her exam. She is right now; she follows her medication and she is free.”
Bouda successfully passed her primary departure certificate in December 2023. She calls her teacher her “best friend”.
“I hope to go on and study at university,” she says, “so that I can become a doctor, and help the many others with nodding syndrome, as well as those who are blind, those who are disabled, so they can go back to school, be strong in their bodies, and work. People shouldn’t fear them.”
