UGANDA | NODDING SYNDROME | PATHOLOGISTS

Leading Ugandan and Canadian pathologists who have studied the nodding syndrome have admitted to failing to find the disease's cause.

According to the World Health Organization, the illness is characterized by head nodding episodes, which are sometimes precipitated by the consumption of food or cold weather.

1. Nodding Syndrome in Uganda researchers: University of Toronto Pathologist Prof. Micheal S. Pollanen, Mulago National Referal Hospital Pathologist Dr. Sylvester Onzivua present research findings on Nodding Syndrome in Northern Uganda while UPDF MP and Pathologist Dr. Nekesa Victoria listen.

Ugandan and Canadian pathologists have been researching the disease since 2018.

On Thursday, they presented their findings to Parliament's committee on health, chaired by Koboko Municipality MP Charles Ayume. They said they established that the nodding syndrome affects the brain cells.

'Brain cells malfunction'

Prof. Michael Pollanen, a neuroscientist from the University of Toronto who led the research, told the MPs that there was a need to carry out more medical research to establish the causes of the syndrome and help medical personnel prescribe the right treatment.

“Our research was carried out on the severe cases of children that had died of the disease," he said.

"From the autopsy, we established that the brain gets affected by the loss of brain cells." In addition, we found a deposition of abnormal proteins in the brain. This deposition happens throughout the brain but is more concentrated on the front lobe of the brain, affecting the normal behavior of the children.

2. Nodding Syndrome in Uganda researchers: Mulago National Referal Hospital Pathologist Dr. Sylvester Onzivua and University of Toronto Pathologist Prof. Micheal S. Pollanen present research findings.

"The cells start malfunctioning and dying." Unfortunately, none of these children get better. Their brains continue to degenerate until they die at the age of about 26. "We believe that through further research, we will be able to establish the cause," said Pollanen.

The neuroscientist said that although some researchers have said the disease is caused by a parasitic worm that causes river blindness, that is yet to be confirmed.

In 2010, the health ministry asked pathologists at Mulago Hospital to investigate the cause of the nodding syndrome.

Dr. Sylvester Onzivua, a consultant pathologist, was assigned to do a postmortem. After failing to find the cause, in 2015, President Yoweri Museveni directed that samples be taken to Canada for further study since Uganda could not carry out such detailed research.

The results still came back inconclusive. During a meeting of pathologists in 2018 in South Africa, Onzivua presented a paper on the ‘new’ strange disease that was eating up children in northern Uganda.

The pathologists agreed to carry out research and have now come up with the findings.

During the LRA civil war in Northern Uganda in the 1990s, the nodding syndrome was first reported. Despite several types of research on the cause of the disease, no conclusive cause or cure has been confirmed.

Although the diseases continue to devastate children, there have not been any reported new cases since 2013. The disease has also been reported in neighboring South Sudan and Tanzania.

It is characterized by repetitive head nodding, often followed by seizures and retardation. It affects children aged 5 to 15 years.

The researchers appealed to Parliament's health committee to allocate more money to research to enable them to investigate further.

3. Member of Parliament for Koboko Municipality and chairperson health committee of parliament Charles Ayume

Pollanen described the disease as a humanitarian catastrophe and proposed that there should be an urgent need for the government’s intervention to supply the affected families with medication for seizures and enough food supplies to help them address the problem of malnutrition among the affected children.

'No test on the living'

Onzivua requested the committee to support research into the cause of the disease.

During the meeting with legislators, he noted that, unlike other diseases such as malaria, where you can do a test and confirm the problem immediately, currently there is no laboratory method to diagnose and confirm the nodding syndrome.

“What we are doing is just based on clinical findings on the brains. We don’t have a test on the living where we can test the disease. This is why we cannot predict that a child born today will develop the disease later in life because we don’t have ways of diagnosing it,” said Onzivua.

Committee chairman Ayume noted that although the disease is new, it has been neglected in terms of funding.

4. Chua West (Kitgum District) County MP, Okin Ojara suggests further investigation on food and relief items supplied during the IDP camps, chemicals from war weapons and vaccines administered to children in the IDP camps, saying these could be causes of Nodding Syndrome.

He said the committee has plans to visit northern Uganda to establish what is happening to the children and their families.

MP Martin Ojara, who sits on the same committee, urged his fellow legislators to work tirelessly to address the issue of nodding syndrome once and for all.

"We have talked at length about this issue, but there appears to be no progress in terms of finding a long-term solution." "At one time, we agreed to form a multidisciplinary task force, but to date, nothing has been done,” he said.