Debate rages over reports of new nodding syndrome cases

Kitgum, Uganda | THE INDEPENDENT | A debate is raging on whether or not there are new cases of nodding syndrome in Kitgum district.

In May, Joe Otoo, a VHT in Kitgum district told Uganda Radio Network that there were new cases of nodding syndrome reported in the past year in Labongo Akwang sub-county.

Following the reports, a team of epidemiologists from the Ministry of Health conducted an assessment and concluded that the suspected new cases of nodding syndrome were all found to be epilepsy cases.

However, on July 23, residents told the third Deputy Prime Minister from Tumaguu, the epicenter of the nodding syndrome that there are new cases.

Two days prior, Otoo said the team from the Ministry confirmed from the field that three of the seven suspected cases were found to be nodding syndrome, but wondered why the team told journalists that there were no new nodding syndrome cases.

On Tuesday, Otoo who is also the coordinator of nodding syndrome in Labongo Akwang insisted before a team from the Office of the Prime Minister, Ministry of Health, and Ministry of Local government that there are new cases.

Earlier, a team from the Ministry of Health had reiterated that research indicates that nodding syndrome could be associated with onchocerciasis, also known as river blindness, an infection caused by black flies and that the recent suspected cases were found to be epilepsy.

Otoo questioned the health officials why there are no nodding syndrome cases in areas such as Kasese, where there are black flies as well.

Dr. Wasomoka said the health officers in the districts have not reported any new cases of nodding syndrome, and so the ministry of health cannot give a report contrary to theirs.

Stephen Komakech, a resident of Kitgum town challenged the health officials to explain to the locals what method they used to arrive at the conclusion that no new cases exist.

Dr. Daniel Kyabayinze, the Director of Public Health in the Ministry of Health, said they explained to the laypeople during meetings, the parameters the experts use in diagnosing diseases.

“Diseases don’t follow one kind of symptom. All diseases present with overlapping signs and symptoms. That is why we call this a syndrome… before you have your facts and you portray, people have suspicions all the time.”

Dr. Kyabayinze said the Ministry of Health cannot lie about the presence of new cases, saying people are dying daily with various ailments.

“People enjoy releasing unrelated and uncoordinated words so that they can attract sympathy from voters, or attract resources. The government is committed to making sure that this does not become a political disease,” Dr. Kyabayinze said.

Dr. Silvester Onzivua, a pathologist says that there is “a conspiracy of silence” about nodding syndrome by the Ministry of Health.

Dr. Onzivua disputes past research that suggests that nodding disease is related to onchocerciasis which is caused by black flies. He argues that onchocerciasis has been affecting people since time immemorial, but his research points out that nodding syndrome has affected children only born between 1993-2005.

According to Dr. Onzivua, the Ministry of Health’s insistence on linking nodding syndrome to blackflies is blocking further research on the ailment.

Dr. Onzivua points out that there is no definite criteria for diagnosing nodding syndrome because there is no machine for testing it, so any diagnosis should take time, not a few days like the Ministry of Health did with the suspected new cases.

Dr. Onzivua appealed to the Ministry of Health not to rubbish the claims of the community, but to take time to monitor, saying the locals are better placed to diagnose nodding syndrome.

He said the past cases of nodding syndrome were confirmed over a period of time, with the involvement of the parents and the VHTs observing and recording their behavior.

Grace Freedom Kwiyocwiny, appealed to the locals to trust the report by the health ministry, continue reporting suspected cases, and detach their emotions from facts when handling the nodding syndrome issue.

The Center for Disease Control-CDC defines nodding syndrome as an unexplained neurological condition characterized by continuous nodding of the head, often accompanied by convulsions and staring spells. It affects children between 5-15 years leaving them stunted physically, mentally, and with degenerated nerves.

The ailment that 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.

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