Enigmatic illness adds to the burden of the South Sudanese civil war

Nodding Syndrome stunts growth, impairs cognition, causes epileptic seizures
Photo: The Wilson family lost their son Charles Abui to Nodding Syndrome. Credit: Julia Gunther

America Wilson first noticed that things weren't right when his daughter Samir, then aged 5, started to nod compulsively and fell over suddenly. America, who is working at the headquarters of our partner SEM in Mundri, brought his daughter to hospital where he learned that she was not suffering from malaria, as he had suspected, but from a condition he had never heard about before and which the doctor referred to as Nodding Syndrome (NS). Since that day, America's life and that of his family has never been the same as before. One by one, his children were diagnosed with NS.

In 2016, America's first-born son Charles Abui died from an extreme seizure which lasted for six days. The danger looms over America's remaining children - yet so far, there is no cure.

Stunted growth, progressive loss of cognitive facilities, epileptic seizures triggered by the sight and smell of familiar food, as well as a characteristic nodding of the head: the telltale signs of Nodding Syndrome mainly affect five to 15 years-old children in Sub-Saharan Africa.

Little is still known about the mysterious progressive disorder, except that seizures of nodding that become more intensive, from loss of neck muscular control to strong tonic-clonic convulsions which often result in injuries, as children may fall and hurt themselves. Many of the children who contract the disease also die at a young age. Light for the World works with our partners to support victims of Nodding Syndrome in South Sudan.

The cause is still unknown

The cause of NS has not yet been discovered. However, the syndrome seems to affect poorest communities hardest. Researchers and health officials have ascertained two important clues that might be linked to the cause of NS: The syndrome occurs in regions where populations are highly affected by both onchocerciasis (river blindness) and epilepsy. Recent studies suggest that an autoimmune reaction triggered by onchocerca volvulus, the parasite causing onchocerciasis, may be at the root of nodding syndrome. Also, in South Sudan and in northern Uganda, NS affected populations have a history of internal displacement and living in internally displaced persons (IDPs) camps. It appears likely that the breakdown of parasite control in areas affected by civil war contributes to the spread of the disease. Still, more research is needed in order to confirm or disprove this promising lead. 

As of early 2018, Nodding Syndrome is only found in small pockets of four countries in the world, all in Sub-Sahara Africa: The Democratic Republic of Congo, Uganda, Tanzania and South Sudan, the latter being the epicentre of the disease. The Ministry of Health of South Sudan estimates the current burden of NS at between six and seven thousand cases, but no systematic large-scale prevalence study has been conducted. 

How we tackle the disease

In partnership with the Ministry of Gender, Child and Social Welfare and the Ministry of Education, as well as Sudan Evangelical Mission (SEM) and local Community Based Rehabilitation professionals, Light for the World has supported people with NS for over nine years as part of its disability interventions. In our role as convener and link between the government and other actors, we have been working to strengthen the sharing of research, and the implementation of holistic approaches to support communities affected by NS. To increase the support for NS-affected populations, Light for the World draws on its organisational expertise in disability inclusive development and Neglected Tropical Diseases like onchocerciasis, which we have been battling through drug distribution programmes for decades.

What Light for the World is doing for families with NS patients:

  • Doing outreaches and identifying clients with NS
  • Supporting the families with NS cases with hygiene rules and preparation of home
  • Supporting to get treatment in local health centers and regional hospitals
  • Supporting with medication
  • Supporting NS clients to attend school and get vocational training

Public Attention is needed

This issue cannot be tackled by one organisation alone, but needs to be addressed by an alliance and through partnerships. However, in order to bring this issue to the attention of the public and raise its profile among international funding agencies, the media may play a crucial role. While there have hardly been any reports about this devastating syndrome, those may be key in sparking a greater sense of urgency in the international development and global health community.