Nodding Syndrome (NS)

The Nodding Syndrome (NS) is an unexplained neurological illness that has been reported in three African countries (Uganda, South Sudan and Tanzania) and mainly affects children for the first time when they are between 5 and 15 years of age.

The characteristic clinical feature of NS is a paroxysmal spell where the head bobs forward repeatedly for several minutes in a seemingly unresponsive affected child. NS is characterized by head bobbing spells. The onset of the spells is often followed, years later, by other types of seizures, growth retardation and cognitive deterioration. Children with the syndrome generally are reported to be healthy until the nodding episodes begin. Early mortality is common, though it is not clear if the deaths are due to the syndrome’s progression or the circumstances that it creates (e.g. drowning, aspirations, burns). The illness has a stereotypical presentation, an intriguing epidemiology and an unknown etiology. According to recent estimates 3,000 children in North Uganda and 8,000 in South Sudan have been affected over the past decade.

To date more than 30 different hypotheses have been postulated based on a few underpowered etiological studies conducted so far, making it impossible to draw firm conclusions on the etiology of NS.

Considering the earlier mentioned lack of knowledge about NS, it is clear that there is an urgent need for more detailed investigation into NS in order to address the outstanding questions with respect to prevalence, natural history and etiology. The findings of these studies will be critical for health care providers to plan and improve their NS treatment and preventive programs.

HealthNet TPO plays an organizational role in a Nodding Syndrome research project in South Sudan that is funded by the Dutch Ministry of Foreign Affairs. Three European partners (AIGHD, KIT, ITG Antwerpen) and a number of partners in South Sudan are involved. Our mutual goal is to find (indications for) the cause of the Nodding Syndrome.