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‘Nodding syndrome’ that makes sufferers bob their head 20 times in 60 seconds on the rise in kids

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Alanyo Fiona 17, is battling with nodding syndrome, she lost her fingers when she fell in a fire during a seizure (Image: Majority World/Universal Images Group via Getty Images)

Experts have warned that nodding syndrome is affecting thousands of children with tots as young as two succumbing to the mystery illness. The neurological disorder is deadly and can cause violent seizures and stunt the growth of patients and cause harm to the brain, as well as cause the namesake head-nodding episodes.

More than 6,000 cases of the disease have been reported in South Sudan in Africa, where the disease seems most prevalent, according to figures from Amref Health Africa. Tragically children who have the disease are often shunned by their communities, Sophia Mohammed, of disability and blindness charity Light for the World, told The Guardian.

“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,” she said. “They often don’t eat with others. They are usually kept out of school and those who do attend school are often asked to sit separately from the rest of the class.”

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Alanyo suffers from nodding syndrome, an unexplained neurologic condition where sufferers repeatedly drop their heads forward ( Image: Majority World/Universal Images Group via Getty Images)

The World Health Organization reports that nodding syndrome was first recorded in Tanzania in the 1960s, before being reported in South Sudan in the 1990s and in northern Uganda in 2007. The condition usually affects children between five and 15 years old and symptoms get progressively worse.

One key symptom is repetitive head nodding, which can be rapid, with sufferers repeating the motion up to 20 times a minute. The disease is not contagious between humans and cases have been reported in children as young as 2 and patients as old as 32.

Scientists still do not know the cause of the disease despite extensive research in the countries where it has been found. “It’s still a mysterious disease,” said Dr Gasim Abd-Elfarag, of Access for Humanity. “We’re still unable to put the puzzle together and understand its actual cause.”

Meanwhile, some experts believe it could be a form of epilepsy that is linked to an infection called “river blindness” (or onchocerciasis) which is spread by flies which live near streams and rivers. Efforts have been made to curb the spread of the disease by targeting the flies and their breeding grounds.

Cases of nodding syndrome have reduced in some areas where the flies have been successfully tackled, including Maridi, a town in South Sudan, as well as in northern Uganda. However, patients have continued to pour in with one clinic run by the Nodding Syndrome Alliance in Mundri seeing 1,500 people since 2020.

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Some 25 children have died from nodding syndrome in the area since the clinic opened but medics have been providing free epilepsy drugs to sufferers which has successfully curbed head-nodding episodes amongst patients. The treatment means that most people with the condition have been able to go back to school or work and lead relatively normal lives, Joseph Yoto, the clinic’s nurse, explained.

Symptoms of nodding syndrome

The most common symptom is head nodding episodes, sometimes these are brought on in patients by the consumption of food or cold weather. These episodes are often accompanied by convulsions or staring spells. Children will stop feeding and appear unresponsive during episodes, with or without loss of consciousness. Some victims experience deterioration of brain function while a majority of cases see growth retardation and malnutrition.

Source: mirror.co.uk

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