UGANDA —The House Committee on Health has urged the government to continue sponsoring scientific research studies on nodding syndrome to determine its causes.

This disclosure was made in a report presented to the House on Wednesday, February 14, 2024, that covered the districts of Gulu, Pader, Omoro, Lamwo, and Kitgum, which are the most impacted by the syndrome.

Nodding syndrome is a severe sickness that affects children aged 5 to 15 years. There is no known cure for the disorder, and its cause is unclear.

The sickness was originally detected by the WHO in South Sudan between 2001 and 2002, with prior descriptions of the condition dating back to the 1960s being limited and considered with skepticism by neuroscientists.

Scientists from the World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC) in Atlanta are currently investigating potential linkages between nodding syndrome and onchocerciasis, or river blindness.

Approximately 93% of all nodding syndrome cases are recorded from onchocerciasis-endemic locations, implying that the two diseases have shared risk factors. Cases have already been documented in Uganda, South Sudan, and Tanzania.

According to the Committee’s Chairperson, Hon. Charles Ayume, the first incidence of nodding syndrome was documented more than 15 years ago, but the available literature does not point to a conclusive cause.

He went on to note that the Ministry of Health should continue scientific study to discover the specific cause of nodding syndrome and, as a result, preventive and therapeutic measures, including funding allocation for research and treatment.

Hon Ayumbe remarked this while presenting the Committee’s findings on a field visit to the Acholi sub-region to investigate the prevalence of nodding syndrome. He also stated that the patients’ family cannot afford to feed the victims as estimated, and that without proper nutrition, their condition may deteriorate to the point of serious neurological abnormalities.

The Committee noticed that nodding syndrome sufferers require a well-balanced diet and healthy food that is delivered on time, which it estimated would cost Shs32.4 million per month for around 30 people.

Given the circumstances, he urged that the Ministry of Gender, Labour, and Social Development provide financial assistance to impacted families, citing the example of monetary assistance to the elderly under the Social Assistance Grants for Empowerment (SAGE) programme.

He went on to say that the cost of this support will be determined annually based on the number of nodding syndrome patients per district and the amount of money distributed to the respective local governments. While underlining the importance of determining the exact number of affected patients and houses.

The Committee also proposed that Village Health Teams (VHTs) be continuously trained so that they may act as a first point of care and deliver medications to patients who are clinically stable.

Noting that rehabilitation centers in Omoro and Kitgum districts had been shuttered due to a lack of government counterpart financing and a lack of donor support, the Committee suggested that rehabilitation services be integrated into nearby health facilities.

The Committee also praised Prof. Richard Idro and Dr. Sylvester Onzivua’s efforts to explore nodding syndrome, with Hon Ayumbe noting that this has not only generated a wealth of vital knowledge but has also gained them worldwide scientific awards.

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