Nodding Syndrome (NS) is largely unknown around the world. The majority of people has never heard of NS, and is unaware of its devastating consequences to the victims. Nodding Syndrome causes children to waste away, be tied to trees. The victims of NS experience continuous episodes of seizures. During seizures, they cannot control their body movement and are prone to wandering off where they can accidentally fall into fires or drowning in bodies of water, causing disfigurement or even death. Northern Uganda is prone to wild fire and flush flooding, which are harmful to victims of NS. Each episode of seizures (and there can be many each day) attenuates the victim’s mental capacity. Over the course of time, many children develop severe growth retardation; a child who is 12 or 13 years of age has appearance of 6 years old. Children lose control of their bodies and are no longer able to perform basic acts of bathing, feeding and or dressing, and eventually regressing to child-like stage.
Local schools do not have the capacity, resources and expertise to provide services appropriate for NS sufferers.
The victims of NS require 24 hours care in order to meet their needs and prevent occurrence of fatal accidents. Research indicates that the only way to manage and treat these children is by meeting their basic needs (Lancet, 2016). A similar project implemented by Hope for Human indicated that providing nutritious diet rich in vitamins B has caused weight gain and reduced seizures in victims of NS. However, Hope for Human ceased its operation in NU due to lack of funding and the victims of NS have regressed and many are dying. A current Ugandan News by the Daily Monitor on 9/02/ 2018, reported that Nodding Syndrome children are dying as Care Centre remains closed. This issue is now urgent than ever before to prevent further deaths and to find a solution for the victims of NS.
Further, special schools have enabled these children to learn and be included in the main education system. The presence of outreach clinics and medical professionals have reduced local fears and allowed these children and their families to be re-accepted by their communities and villages (Lancet, 2016).
While some children are able to study in a special needs classroom and eat nutritious meals, many victims still require fulltime care, and this leads to parents ceasing work or cropping. Because there are no safe places of care, parents frequently tie their children to trees or posts for their own safety to keep them from wandering off into dangerous places.
Eventually NS kills many of its victims. Death appears often to be a result of accidents such as drowning, falling into fire, starvation, and seizures in the late stages of the disease, which can be avoided by provision of proper health care facilities and services.
Please refer to these published articles about Nodding Syndrome and victims.
Nodding HORROR: 12-year-old victim is tied to a tree for 13 hours everyday, written by Edward Echwalu (2015).
Nodding syndrome children die as care centre remains closed, written by Julius Ocungi (2018).