
Nodding syndrome is a debilitating neurological disease affecting children in Eastern and Central Africa. At the moment, the cause of this disease is unknown and there is no cure. The affected child experiences specific types of epileptic seizures and in some cases also cognitive retardation and stunted growth. Evidence suggests that there is a link between onchocerciasis (river blindness, caused by microfilariae transmitted by blackflies) and nodding syndrome/epilepsy. In a multidisciplinary study, ITM researchers are trying to discover what the cause of the disease is by collecting socio-behavioural, epidemiological and entomological data that will contribute to understanding the disease better.
‘Nodding Syndrome’. An Interdisciplinary Study Contributing to the Identification of the Cause of Nodding Syndrome in Three Countries.
Principal investigator
- Sarah O’Neill (Department of Public Health)
Co-promoters
- Koen Peeters Grietens (Department of Public Health)
- Kristien Verdonck (Department of Public Health)
- Maxime Madder (Department of Biomedical Sciences)
- Marleen Boelaert (Department of Public Health)
- Emmanuel Bottieau (Department of Clinical Sciences).
SOFI Budget
Countries
Key facts
- Nodding syndrome is a neurological illness, which affects an increasing number of children between the ages of 3 and 15 years.
- The disease appears in South Sudan, Tanzania and Northern Uganda. The affected regions have a high prevalence of onchocerciasis (river blindness).
- In the affected areas, nodding syndrome is a major public health problem associated with morbidity and mortality, severe socio-economic consequences and social exclusion.
- To date, little is known about how people in affected areas live, what they are exposed to, what their habits and daily routines are and where they seek treatment.
- There is a high prevalence of epilepsy in onchocerciasis endemic areas. Regular (annual) mass drug administration of ivermectin and treatment of the rivers with larvicide has been shown to reduce the incidence of epilepsy and nodding syndrome in these areas.

ITM and Gulu University staff with residents of Beyogoya village in Uganda