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MPs Ask Gov’t to Fund Extensive Research into Nodding Disease :: Uganda Radionetwork
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MPs Ask Gov’t to Fund Extensive Research into Nodding Disease

Apart from scientific research and more resource allocation for treatment, the Committee recommended at least three medical staff to be deployed at the designated facilities for effective diagnosis of the disease and prescription of management plans for the affected households.
File photo of a Nodding Syndrome patient in Labworomor village, Labongo Akwang sub-county in Kitgum District. Dominic Ochola

Audio 2

Legislators have urged the government to fund extensive scientific research studies to ascertain the cause of nodding syndrome, a mysterious disease that has ravaged Northern Uganda for nearly two decades. Towards the end of 2023, the lawmakers on the Health Committee of parliament led by Dr. Charles Ayume, the Koboko Municipality Representative conducted spot field visits in Gulu, Omoro, Pader, Kitgum, and Lamwo Districts, the epitome of the ailment where they observed that the disorder is still prevalent among families.

Dr. Ayume told URN that in its findings released last week, the Committee observed that nodding syndrome still does not have a definitive causative agent, which requires the Ministry of Health to sanction in-depth research to establish its precise cause for ultimate preventive and curative measures. Apart from scientific research and more resource allocation for treatment, the Committee recommended at least three medical staff to be deployed at the designated facilities for effective diagnosis of the disease and prescription of management plans for the affected households.

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Since feeding is an important component of the treatment, the Committee witnessed that nodding syndrome patients need a timely, balanced, and nutritious diet that contains fruits, vegetables, dairy, grains, and protein among others, which affected rural families cannot afford.

To mitigate poor feeding, Dr. Ayume proposed to the Ministry of Gender, Labour, and Social Development to provide financial support under the Social Assistance Grants for Empowerment (SAGE) program to the affected families through the respective Local Governments.

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Castro Odur, and Michael Rackara, residents of Kitgum and Omoro Districts respectively are among some parents who have lost children to the neurological disorder. They told URN that for over 10 years, the ailment has weighed them down financially, and wished the children ‘died’. Kilak County Member of Parliament, 

Gilbert Olanya, says due to the burden of the disease on poor households, some lawmakers under the Acholi Parliamentary Group – APG, have been donating food aid and other essential needs such as soap and bedding to the affected families. In Acholi and part of the Lango regions, the Nodding disease and epilepsy epidemic started around 2000. 

Although no new case has been recorded since 2015, the ailment has killed over 137 so far. A total of 2,143 cases of the disease were reported between 2012 and 2017, according to the Ministry of Health. In May 2021, the prime minister’s office distributed iron sheets to households with sick children through the Ministry of Northern Uganda but was insufficient.

The World Health Organization - WHO first brought the disease to the attention of the world when it was investigating cases in South Sudan in 2001–2002. Earlier studies and descriptions of the disease from the 1960s onward had been limited and treated with skepticism among neuroscientists.

Scientists from WHO and the Centers for Disease Control and Prevention (CDC), Atlanta, are now studying possible links between nodding syndrome and onchocerciasis, also known as river blindness which medical researchers have confirmed is responsible for about 93% of all nodding syndrome cases.