Light For The World
Nodding Syndrome
The America family, Wilson America, with his wife Janet, and their 7 children, all of whom suffer from nodding syndrome, Mundri.
Wilson America is father of 7 children with nodding syndrome, Mundri, South Sudan, 2018.
Abawo Joy Ramadan (aged between 15 or 16) suffers from nodding syndrome, and the bandage wrapped around her left hand conceals a severe burn injury, which she sustained after falling into a fire during a seizure, Mundri District, South Sudan, 2018.
Elina Salowa (28) suffers from nodding syndrome and shows the burns she sustained after falling in a fire during a seizure, Mundri District, South Sudan, 2018.
Zaina Sura (18) suffers from nodding syndrome, Mundri District, South Sudan, 2018.
Sarah Dawa (25) Sudan Evangelical Mission (SEM) field worker, Mundri, South Sudan, 2018.
South Sudan, 1018
Nodding syndrome is a little-known epileptic disorder that affects children aged 5–15. It is characterised by involuntary head-nodding seizures—often triggered by eating or cold—and is associated with stunted growth, neurological damage, and cognitive impairment. The cause remains unknown and treatment is largely symptomatic with anti-convulsant medication. Years of regional conflict have made research and surveillance in South Sudan virtually impossible, but cases cluster in areas with river blindness (onchocerciasis) and high epilepsy rates, often among displaced families.
In collaboration with Light for the World, I travelled with writer Nick Schönfeld to Mundri, to meet community members with nodding syndrome, including the family of Wilson America—all seven of his children are affected by by the disease, although he himself and wife remain unaffected.