Private Story
A mysterious Fate: Nodding Syndrome in Northern Uganda
in remote northern Uganda. For a long time, no one was sure how they got it, or how to cure them. Recently researchers concluded that the disease is caused by an 'abnormal protein' that accumulates in the brain and causes brain degeneration - but still with no known cause of the abnormal protein or treatment. First discovered in Tanzania in the 1960s, the disease causes stunted growth, body deformities – even blindness and death. Since 2012, over 3,000 cases have been recorded by the Ugandan Ministry of Health with 62 new probable cases registered recently. The disease mostly affects children between 5 and 15 years old. These children suffer in the shadows, their plight ignored by local government and beyond. The one center that has provided most of the support for the incurable condition recently shut down. Through the lives of Walter and Grace, both children with nodding syndrome, this story brings to light this baffling condition and the dedication of their mother Lucy to care for and love her children amidst mounting challenges. With new cases coming up again, this mysterious disease continues to affect and disrupt the lives of the young ones.
I documented this issue with an aim of sharing the story with the world and drawing attention towards the disease and hopefully draw more research and attention to the victims of this unfortunate life.
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