Nodding Syndrome - Nodding Syndrome Alliance

According to the World Health Organization, the Nodding Syndrome (NS) is a neurological condition with unknown aetiology, characterized by brief episodes of sudden forward dropping of the head (nodding).

This severe epileptic condition was first documented in the United Republic of Tanzania in the 1960s, then later in the Republic of South Sudan in the 1990s and in northern Uganda in 2007.

Typically, NS affects children between the ages of 5 and 15 years old, causing progressive cognitive and motor dysfunction, neurological deterioration, and stunted growth.

Epilepsy prevalence ranging from 2-11% has been observed in many onchocerciasis-endemic regions; this is much higher than the median epilepsy prevalence in sub-Saharan Africa (1.4%), therefore the current epilepsy situation in some areas of South Sudan has been deemed an epidemic.

Onchocerciasis (aka “river blindness”) is caused by a worm, Onchocerca volvulus, that is transmitted by blackflies (Simulidae).

An association between onchocerciasis and epilepsy was already reported in 1938 in Mexico and later in Tanzania.

Most recent scientific literature points to the existence of a strong association between Nodding Syndrome and Onchocerciasis (a Neglected Tropical Disease recognized by the World Health Organization).

The photos on this page are by Adrienne Surprenant

Nodding Syndrome Alliance: Coming together to tackle Nodding Syndrome and other forms of epilepsy in South Sudan.

Nodding Syndrome Alliance:
Coming together to tackle Nodding Syndrome and other forms of epilepsy in South Sudan.