Over 6,000 children in South Sudan are experiencing a confusing health crisis known as Nodding Syndrome. This neurological condition causes repeated head nodding episodes, intense convulsions, and stunted growth, leaving its young victims suffering.
Nodding syndrome, which was first recognized in Tanzania in the 1960s, has subsequently spread to South Sudan and parts of Uganda. It primarily affects children aged five to fifteen, but cases have been reported in toddlers as young as two and adults up to the age of 32.
The distinctive characteristic of this syndrome is the constant head nodding, which can occur up to 20 times per minute. These episodes, which are frequently caused by food consumption or cold weather, may be accompanied by convulsions or periods of staring into space.
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 transmittedSophia Mohammed, Disability and Blindness Charity Light for the World
Despite years of investigation, the causes of Nodding Syndrome remain unknown. Scientists are confused by the mystery, unable to determine the precise cause. Some believe there is a link to onchocerciasis, often known as river blindness, which is carried by black flies that live near fast-flowing rivers and streams.
The impact of Nodding Syndrome extends beyond physical ailments. Children suffering from this illness undergo societal ostracism and stigma. Misunderstanding generates fear, resulting in social isolation and exclusion from educational opportunities.
Treatment alternatives provide limited relief. Anti-epileptic medicines may help with seizures in some circumstances, but their effectiveness is uncertain. Meanwhile, the search for treatment continues, with experts diligently investigating interventions and suspected links to onchocerciasis.
Despite the struggle, stories of persistence arise. Communities unite behind affected individuals, offering support and hope for a brighter future. Specialized clinics provide essential care, while efforts to eradicate black flies offer a glimpse of hope.
As researchers delve deeper into all aspects of this disorder, they are hopeful that discoveries may lead to viable treatments and prevention techniques. Until then, the fight against nodding syndrome is continuing, fueled by the constant hope of the people affected and the passion of scientists and healthcare workers working for a better future.
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 do not observe black-fly bites, cases of nodding syndrome are rare, if not absent.Stephen Jada, Doctor and Researcher with AMREF Health Africa
Characterized by head nodding episodes, often triggered by food consumption or cold weather
Episodes accompanied by convulsions or staring spells
Child appears non-responsive during episodes, with or without loss of consciousness
Progressive cognitive dysfunction and neurological deterioration
Stunted growth
Repetitive head nodding, occurring up to 20 times a minute
(Input from various resources)
(Rehash/Susmita Bhandary/MSM)