Arriving in Northern Uganda, contrary to life in Kampala , the atmosphere was quite serene .Seeing bushes on both sides of the road with few huts well-spaced apart, it immediately dawned on me that I’m in a village where I will live for about 7 weeks. Nevertheless , no regrets. I asked for it! All I had on my mind was meeting the children I had been longing to see…
Firstly, I had to visit the local leaders to seek their approval for my research and I was so overwhelmed by the reception I got from them. Finally, the next day I met these children who were also very excited to see me! They welcomed me with an interesting and energetic dance. It was unbelievable! I couldn’t beat them at it !! These children were amazing, with beautiful hearts full of life and energy. At first, I wondered if they were affected by the mysterious illness, Nodding syndrome, until the communication officer for Hope for Humans Comprehensive Care Center at Odek , Mrs Apio Christine, showed me the pictures of these children before and after management. There’s a huge difference!!! I wondered why some parents discriminate against their children, and sometimes leave them to die all because they have nodding syndrome. Although the syndrome has no known cure, but seeing the children managed at this center made me know that having nodding syndrome is not a death sentence after all, if well managed with regular anti-seizure medications and nutritious foods.
There are over 300 children in this community that are afflicted with this illness and only about 70 of these children are being cared for at this center .I wonder where the other children are? Do they access healthcare? Is there a barrier to assessing healthcare?
The voices of these children need to be heard. They can sing, dance, be happy, and live a good life.
Nodding syndrome is an illness which affects children between ages 5-15 years manifesting with repetitive nodding, drooling of saliva, seizures and cognitive impairment. Affected children lose their minds, wandering around which in some cases has led to accidents such a falling into fires, drowning and even death. Parents often tie their children to trees, so that they don’t wander off. About 7,000 children have been affected with Nodding syndrome in Uganda, Tanzania and Sudan as estimated by World Health Organization. There is no known etiology of the disease and no known cure. However some risk factors such as river blindness, malnutrition, weather changes, pesticides, infections, exposure to munitions and some foods have been associated with the syndrome, but not proven.
Children who live in the poorest conditions with lack of clean water and nutritious foods are more likely to be susceptible to nodding syndrome.
for the video shot, at my first visit to the children at Hope for Humans Comprehensive Care center. Also see pictures of these children before and after management at this center. There is hope for children with nodding syndrome!!!
Follow me here http://hosted.usf.edu/GoingPlaces/?author=140 as my adventure continues…..