Mysterious syndrome that makes sufferers nod 20 times a minute is on the rise – with thousands of new cases in kids
THOUSANDS of children as young as two are suffering from nodding syndrome, experts warn.
The deadly, mysterious neurological disorder that causes head nodding episodes and violent seizures, stunts growth and can harm the brain is on the rise.
It is most prevalent in South Sudan, with more than 6,000 cases reported in the eastern central African country, according to Amref Health Africa.
Sophia Mohammed, of disability and blindness charity Light for the World, told The Guardian children with the disease are often shunned by the societies they live in.
She said: “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.
“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.”
Nodding syndrome was first spotted in Tanzania in the 1960s, before being reported in South Sudan in the 1990s and northern Uganda in 2007, according to the World Health Organization.
The illness typically affects children between the ages of 5 and 15, causing progressively worsening symptoms.
Cases have been reported in children as young as two and in adults aged up to 32 and it is not contagious between humans.
Despite extensive research in the countries, scientists still do not know what causes the disease.
Dr Gasim Abd-Elfarag, of Access for Humanity, said: “It’s still a mysterious disease. We’re still unable to put the puzzle together and understand its actual cause.”
Experts believe it may be a form of epilepsy linked to onchocerciasis — an infection known as “river blindness” that is caused by black flies that live near fast-flowing streams and rivers.
Researchers are attempting to curb its spread by targeting the flies, including efforts to get rid of grass where the bug breeds.
These have had an impact in Maridi, a town in South Sudan, as well as in northern Uganda, where cases of nodding syndrome fell when black flies were eradicated.
However, clinics have continued to see thousands of patients, including one run by the Nodding Syndrome Alliance in Mundri that has seen 1,500 since 2020.
Free epilepsy drugs have curbed head-nodding episodes but 25 children have died since the clinic opened then.
Despite the ongoing tragedies, Joseph Yoto, the clinic’s nurse, said efforts have meant most patients are able to go back to school or work and go on to live normal lives.
What are the symptoms of nodding syndrome?
Nodding syndrome is characterised by head nodding episodes which are sometimes precipitated by the consumption of food or cold weather.
They are often accompanied by convulsions or staring spells.
During episodes, a child stops feeding and appears non‐responsive, with or without loss of consciousness.
There is deterioration of brain function in some victims, and malnutrition with growth retardation in the majority of cases.
Symptoms include:
- Progressive cognitive dysfunction
- Neurological deterioration,
- Stunted growth
- Characteristic nodding of the head
Source: World Health Organization