Nodding Syndrome: Experts make major breakthrough

Assistance. Some of the children suffering from Nodding Syndrome in Omoro District receive relief items on April 15. Photo by Michael Kakumirizi

What you need to know:

  • The Prime Minister, Dr Ruhakana Rugunda, in May 2014 said “the affected people believe that Nodding Syndrome is due to evil spirits of the dead who were not buried, chemical effects of the prolonged LRA war, and LRA crimes committed against the neighbouring communities.”
  • Still, there are no answers as to why the illness attacks only children, and in most cases, some and not all in a family and whether there is a genetic predisposition.

Kampala. A group of six scientists have announced a breakthrough about Nodding Syndrome, concluding the condition is a result of abnormal deposit of protein in the brains.
The findings, first published last week in Acta Neuropathologica-Springer, a peer reviewed monthly journal on neuropathology, follows a year-long research and multiple examination of brain tissues of children who died of Nodding Syndrome in northern Uganda.

Prof Michael Pollanen from Forensic Pathology at the University of Ontario, and Uganda’s consultant pathologist, Dr Sylvester Onzivua, led the investigations.
The other researchers included Dr Janice Robertson and Dr Paul M McKeever, both from University of Toronto, and Gulu University’s Prof David Kitara, Dr Francis Olwa and Dr Amanda Fong.
“In conclusion, we have shown that the epidemic neglected tropical disease known as Nodding Syndrome (NS) is a tauopathy,” the scientists reported, referring to a neurodegenerative disease linked to deposition of insoluble proteins in the brain.

They added: “On this basis, NS may be a newly recognised neurodegenerative disease with a regional cluster in East Africa. The discovery that NS is a tauopathy may facilitate determining the cause of NS, because it opens up new lines of inquiry that were unavailable prior to our neuropathologic studies.”
The findings were, according to highly-placed sources, communicated to the Health minister, Ms Jane Aceng, the Permanent Secretary in the ministry, Dr Diana Atwine, and the acting Director General of Health Services, Mr Henry Mwebesa, in June, this year.
In an interview last night, Dr Onzivua said their discovery brings the scientific community closer than ever to establishing the cause and actual treatment.

“The most significant thing is that we have described the main damage and identified what is wrong with the brain of the affected persons,” he said by telephone.
In 2014, Dr Wun-Ju Shieh, who led a team of American scientists at the Centers for Disease Control (CDC) and examined samples from the brain of five dead Ugandan children, sighted crystal-like substances in portions of their brains.
The substances that glittered under polarising lights were observed in the pon, a part of the brainstem where the spinal cord connects.

The CDC team at the time described the sightings as “interesting preliminary histopathologic (microscopic examination) findings”, although the significance was inconclusive pending additional research.
The six-member team conducted one aspect of the study, whose findings Dr Onzivua described as “ground-breaking.”
“There was abnormal protein deposited in certain areas of the brains of Nodding Syndrome victims. It is like the brain of a young child is getting old, which shouldn’t be at all,” he said.

Symptoms
Nodding Syndrome makes victims get sporadic seizures, remain underweight and with diminished immunity, drip saliva and nod uncontrollably, leading to accidents and death.
Government until the latest finding had linked the condition to River Blindness, although there is no independent study confirming the claim.
As such, the government sprayed along Pager, Aswa and Agago rivers to kill black flies whose bites cause River Blindness.

Experts at Makerere University and in Belgium are currently conducting an investigation to establish whether there is a link between Nodding Syndrome and River Blindness.
Amassing of protein in the brain is a characteristic more prevalent among ageing people and the latest researchers said a full study is required to inquire into why it was happening among children, and particularly those who lived in specific Internally-Displaced People’s (IDP) camps in two districts.
Most of the victims are children born between 1995 and 2005.

Nodding Syndrome became an explosive political issue after leaders in the northern region accused the government of neglecting the plight of their children, prompting the Health ministry and well-wishers to establish treatment centres in affected areas.
The centres have largely closed and the fate of Nodding Syndrome victims has dropped off the national health crises priority list.

The Prime Minister, Dr Ruhakana Rugunda, in May 2014 said “the affected people believe that Nodding Syndrome is due to evil spirits of the dead who were not buried, chemical effects of the prolonged LRA war, and LRA crimes committed against the neighbouring communities.”
Still, there are no answers as to why the illness attacks only children, and in most cases, some and not all in a family and whether there is a genetic predisposition.

Other studies
Scientists are also evaluating whether nodding syndrome, observed in Tanzania in 1962 and lately more widespread in South Sudan, might be caused by tetramine poison associated with some toxic plants, vaccines and chemical weapons.

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