Nodding syndrome is a distressing disease that is visibly present, especially in children in South Sudan. One such patient is Tabo who unexpectedly becomes a target of this mysterious neurological disease that has become a serious problem for the country. It comes with regular convulsions and when it happens, it scares away all other children. Accounting for one such incident, Penina Monyo Gulu Biro, the 17-year-old’s mother gently holds the girl while the attack lasts. She usually takes a long and guttural breath before hitting the ground unconscious with her entire body shaking. It is usually a minute or two before Tbo settles down, and sits up with her tears rolling down. “She cries because she’s sad to be like this,” says Biro.

In 2016 Tabo was diagnosed with nodding syndrome, the neurological disorder that also killed her 10-year-old sister, Nyibili. This disease was first identified in Tanzania in the 1960s and was finally seen in South Sudan in the 1990s. In 2007, it was also spotted in Uganda. In the past five years alone, multiple cases have also been seen in other places. According to to Dr Gasim Abd-Elfarag, an expert on the disease who leads a South Sudanese charity, Access for Humanity, cases have been reported in the Democratic Republic of the Congo, the Central African Republic, and Cameroon.

However, South Sudan’s Western Equatoria state, where Tabo’s hometown of Mvolo is located, has seen the highest cases of nodding syndrome in the world. This place alone has more than 6,000 cases recorded at health facilities across four of the state’s 10 counties, according to Amref Health Africa, the aid organization leading the response in the country. The Nodding Syndrome Alliance (NSA) is a consortium of aid groups and universities established in 2019 which Amref is a part. It runs research programs and specialized clinics in the counties of Maridi, Mundri West, and Mundri East, which border Mvolo to the south. Despite such major numbers of cases, there is no specialist clinic in Mvolo County. According to Lexon Bira, a local coordinator for the Relief and Rehabilitation Commission, a government-run humanitarian agency, Mvolo is a hotspot of the disease, with 3,000 cases. Remote villages in the area also have little to no access to the anti-epileptic drugs that can help manage symptoms.

The cause of this neurological syndrome is yet to be known and no cure has been found for the disease. This affects children aged three and above, continuing into adulthood. When the convulsions begin, head-nodding episodes are triggered by the sight of food and dropping temperatures. The condition even worsens without epilepsy drugs. Without any medications, seizures potentially cause diseases and even death. Long-term effects of these episodes include brain damage, stunted growth, and mental impairment. The affected children also usually become socially isolated as they are kept away from any 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 supports disabled people and promotes eye health.

Phillip Goodwin

Phillip Goodwin graduated in 2007 from reputable University majoring in Economics and Accounting. In the past years, he has gathered an immense amount of experience and written for other financial sites and published independent investment research, primarily on initiative companies and new entrepreneurs. He has been working in the writing industry for the last 4 years. He has a motivational persona and trains staff on the finer points of writing, editing and getting the news out on time. Address:  1635 Rainbow Road Arcadia, CA 91006,Unites states of America Contact Number:  (+1) 626-254-4709 Email: [email protected]