What is Nodding Syndrome?
Nodding Syndrome is a mysterious neurological disorder affecting both the brain and nervous system. Those suffering from the disease experience regular seizures that begin with the nodding of the head, hence the name Nodding Syndrome. During these seizures the children do not have control over their bodies and become delirious after an episode. They often wander into the bush and swamps with the potential for drowning and others may fall into open fires. So many children bear the scars of this tragedy.
Who is affected by Nodding Syndrome?
Nodding Syndrome is found in Northern Uganda, South Sudan, and previously Tanzania. It is believed by many people that this Syndrome is the result of years spent in the Internal Displacement Camps (IDP) during a time of war in Northern Uganda with the Lords Liberation Army (LRA) led by Joseph Kony. At the time those suffering from the disease were children ranging from 5 to 15 years old. The true effect of the disease is felt throughout the family and surrounding community. In order to keep their children from wandering off, the parents (often a single mother) are forced to tie up their children or lock them in a hut so they are able to continue working and struggling for survival for their family. As the child’s condition progresses they require continuous care. For families living in a region marked by extreme poverty, this simply becomes too much to bear.
Why do children experience these seizures?
Nodding Syndrome mysteriously has no known causes or cures. Strangely the seizures are most often triggered by eating or by being exposed to extreme hot or cold conditions. As the child’s illness progresses it becomes increasingly difficult to keep them well nourished, as food continuously triggers their seizures.
How can we help children suffering from Nodding Syndrome?
Though there is no known cure, targeted treatments can drastically improve the condition and health of these children. Through our time learning first hand about Nodding Syndrome we have learned that there are two main components for improvement: consistently taking seizure medication, and a diet of regular nutritious food. Add to this, compassion, care, prayer and the love of Jesus and we can see a child begin to rise up.
Beyond these things, children suffering from Nodding Syndrome benefit most when their families and communities are also being lifted up. These parents are often living in desperate conditions with little hope for their futures. It is our hope to not only supply the direct resources needed to counteract the progression of the disease, but also to come alongside the families as a partner. Children with Nodding Syndrome are not able to thrive without their families thriving as well. At Journey International we see the need to address some of these desperate situations head on with resources to provide adequate shelter, food, medication, and clothing. We see a longer term solution such as education, vocational training and resources to help with growing crops for sustainability. We truly see a holistic approach as the best way forward, with physical and spiritual needs being met.
