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Custodians of Nodding Syndrome Debilitated Children Ask Gov’t for Skills Training

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Grace Atim, an elderly mother and resident of Ajan village in Lamola Parish in Odek lost her daughter to the disease. She says if they are empowered through vocational training and soft skills such as agribusiness, village savings schemes, and tailoring and small business enterprises they will be able to fend for themselves and relieve the government the burden of begging.
Vincent Ocan aged 23 a patient with the nodding syndrome in Kitgum District - Photo by Dominic Ochola

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Caretakers of children debilitated by the nodding disease syndrome in Omoro District want the government to roll out special soft skills training to ensure sustainable livelihood in their families. The affected families say they have continued to survive on handouts from well-wishers and charity organizations, saying the on-and-off relief interventions are short-lived, which requires other strategies for self-reliance.

Filder Anyeko from Odek Sub-County in Omoro disclosed that ever since her two sons aged 15 and 20 years were diagnosed with the condition, it has always been an uphill task looking after them. She says giving them startup capital with adequate training will ensure they become self-reliant and support their homes.

Grace Atim, an elderly mother and resident of Ajan village in Lamola Parish in Odek lost her daughter to the disease. She says if they are empowered through vocational training and soft skills such as agribusiness, village savings schemes, and tailoring and small business enterprises they will be able to fend for themselves and relieve the government the burden of begging.

Harriet Anena, 25, a resident of Teolam village in Odek Sub-County whose two siblings have been grounded by the strange ailment since 2013, says she dropped out of primary school to take care of them.  Speaking to URN, Anena contends that the care she gives the siblings has eaten up all her time for further studies and urged the government to enrol her for a soft skilling program to ensure she supports the family. 

Acholi Byte:

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David Ojok, a concerned resident of Ajan village still in Odek observed that following the closure of the treatment center in the area, several nodding syndrome patients have died because their families are too vulnerable to give them care.

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Douglas Okello Peter Okao, the Omoro District LC Chairperson told URN that he has written to the Office of the Prime Minister – OPM to consider supporting the affected families through the livestock restocking program to improve the living conditions of the affected families.

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Recently, the OPM through the Ministry of Northern Uganda supplied the affected families in Omoro, Pader and Kitgum with iron sheets to improve on the shelter for the patients but the families are too poor to utilize the iron sheets.

Statistics from the District Health Department shows at least seven of the children have died since 2018 following the closure of the treatment center. There currently 77 children living with the condition in need of urgent and proper health care.

The disorder, which the World Health Organization – WHO, says has no set of causes was first documented in Tanzania in the 1960s, then later in South Sudan in the 1990s and in northern Uganda in 2007. The disease causes progressive cognitive dysfunction, nervous deterioration, stunted growth and a characteristic nodding of the head.

Despite numerous and extensive investigations in all three countries by researchers, very little is known about the cause. Some researchers have attributed it to the parasitic nematode, which also causes river blindness and to the blackfly