Mvolo County, South Sudan – Sabi is 24, but looks 7. He is an orphan from Mvolo county who is afflicted with Nodding Disease, a curious and deadly disease where the afflicted experience permanent and complete stunted growth. His name in Arabic means “friend”, though these days he goes by the nickname “akulukulu” – one who eats a lot but does not grow.
He is one of thousands of people who have a little-known illness that affects children primarily in Northern Uganda and South Sudan. A short film by two Belgian journalists will be broadcast on VRT on October 17 in attempt to bring the world’s attention to this problem that affects so many families in these countries. AWEPA assisted journalists Chris Michel and Leo de Bock in gaining access to Mvolo and Mundri West County (South Sudan), where the disease has caused havoc among communities there.
On October 17, Mr. Michel will be a part of weekday programme Terzake at 8 p.m. to talk about the film, which features Jacob Malual, the AWEPA local co-ordinator in Western Equatoria and Hon Rejoyce Bauda, AWEPA partner and MP. The film will be aired in the same episode.
Mr. Michel and Mr. de Bock went to Uganda in August to find out more about this dreaded disease. There, they discovered that AWEPA works with the local communities in South Sudan affected by this disease. Although AWEPA does not provide medical assistance, and works primarily with Parliamentarians and councillors, project co-ordinator for South Sudan Kris Debref noted that the disease affected children from four of the counties where AWEPA conducts its local council training. She sent pictures of the afflicted to the Tropical Institute in Antwerp, and a team from there will shortly be conducting research on the disease in South Sudan.
Many members of the communities in Mvolo, Mundri West , Mundri East and Maridi had approached the councillors for help in dealing with the outbreak. It is called Nodding Disease because the sufferer experiences seizures, especially when they are fed. Unfortunately there is still not much known by way of prevention or treatment. The afflicted seldom live past the age of 25.
- A radio interview with Chris Michel will be aired on October 17 from 18-19 p.m. on Radio 1. The following week, the interview and programme will be aired on Radio 1 Netherlands and NOS Nieuwsuur.
- To view the Terzake episode once it has been broadcast, click here and scroll down to the section “alle afleveringen”. Choose the one with the date 17/10/2013.
- Dutch article on Nodding Disease