About

Northern Uganda as a whole suffered 23 years of Insurgency that made Thousands of people tortured; tens of thousands lost their lives; over 30,000 were abducted (mostly children); and 1.5 million people were forced into Internally Displaced people’s Camps. It has also experienced several epidemics including: Ebola, cholera, Hepatitis, Yellow fever and other conditions like HIV/AIDS, high prevalence of Post-Traumatic Stress Disorder (PTSD) and currently Nodding Syndrome (Epilepsy). Many children have permanent Neurological disabilities due to susceptibility to major illnesses such as Malaria and Meningitis. Nodding Syndrome is a new emerging syndrome that affects children mostly between the ages of 5 -15 years. It was first identified in Northern Uganda in 1997.

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Nodding Syndrome immediately leads to functional decline among affected children and families. It leads to feeding difficulties, behavioral complications, cognitive and learning disabilities, emotional problems, malnutrition and growth problems, and varying degrees of physical disabilities. In October 2012, the Ugandan Ministry of Health had recorded 2,775 cases of Nodding, mainly boys between the ages of five and 15. In Kitgum District alone, 991 Nodding and 2,246 epileptics Cases were recorded. Nodding Syndrome is now affecting the entire Acholi sub-region of Uganda, currently comprising seven districts including Kitgum, Pader, Gulu, Agago, Amuru, Nwoya and Lamwo. The majority (90%) of both suspected and confirmed cases of Nodding syndrome are found in the Districts of Kitgum, Pader and Lamwo. In addition, it is documented that these three districts also have the highest prevalence of epilepsy and disability in Uganda as well. Nodding syndrome had been noticed in Kitgum and Pader, lamwo  districts for over five years before Kitgum District Health Office officially reported it to Ministry of Health in August 2009.

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An investigation team in March 2009 attributed the problem to a post-traumatic stress disorder while another team conducting Onchocerciasis mapping in March 2009 found high levels of microfilaria in 88% of the 60 patients with this condition sampled.  Black flies are a big problem in the area and which has been considered / suspected as one of the greatest risk factors in Nodding syndrome. Results from a food consumption survey in 2008 revealed high levels of micronutrient deficiencies. Further investigations of the condition by another team from Ministry of Health in August 2009 noted that the disease started in 2003 when most of the Northern Uganda population had moved to (IDP) camps, predominantly affecting children aged 5 – 15 years, who progressively became more severe with time, and associated with mental and growth retardation. The team concluded that this crippling disease is a “Progressive Cerebro-Muscular-Skeletal Epileptogenic Syndrome” whose cause had not been established, although it had been associated with high prevalence of Onchocerciasis that is a parasitic infection causing river blindness and considered as an epilepsy syndrome. A disorder fitting the description of Nodding Syndrome has been described in the past in two distinct geographic locations of sub-Saharan Africa including Tanzania (1962) and Southern Sudan (2003).  Also in 1983, a similar condition was reported in Liberia as well as in the Western and Eastern Uganda and in Burundi.