South Sudan: The mystery of Nodding ‘disease’

In these huts are families living on the margins, battling this strange disease.

There is a village in South Sudan where, as you walk through the thin footpaths lined with tall green, healthy elephant grass, you'll see children seated outside their neat huts under mango trees. As you walk closer, you'll think the kids are playing a silent game after a long day in school. 

You'll be wrong. 

You see, Kazana II village in South Sudan's Western Equatoria State is not your typical village. Yes, it's hard to ignore the soaked humid air and lush greenery, but underneath the heavy storm clouds and in thatched roofs are families haunted by a mysterious disease. 

One family living next to a dam has five children seated on the ground under a mango that provides a thick canopy. Of the five children silently sitting on the dusty earth with stretched bare feet, three live with some form of disability, and one shy girl has a scarred face. 

If you ask, you'll be told that they suffer from a mysterious disease called nodding syndrome, which has denied them the joy of childhood and pushed their families to pits of misery. You'll also be told that the shy girl with a scarred face got a seizure attack as she was seated around the fireplace, falling into the fire face first. You will also find out that this is just one of the many families in the village affected by the mysterious disease and that almost every family in Kazana II has a child suffering from it. 

Nodding syndrome, an extremely rare - and devastating - form of epilepsy, is a neglected neurological disease characterized by head-nodding seizures, hence the syndrome's name. Over time, untreated and because of neurological deterioration, it results in high rates of premature death.