Their conditions improving, nearly all of the children admitted to health centres for nodding syndrome have now been released, according to Uganda’s Ministry of Health; less severely affected patients have also started treatment.
Even as health officials bring the symptoms under control, the cause of the syndrome remains unknown, which means all of Uganda’s diagnosed patients will have to remain on treatment for long periods. And gaps in the health system – highlighted by a recent two-day strike at an affected health facility – have raised questions about the government’s ability to provide consistent care.
The syndrome, so far only diagnosed in children and adolescents, is marked by episodes of involuntary nodding, usually triggered by food or cold. It has caused reduced brain function, including loss of speech in some patients, as well as the withering of arms and legs.
Diagnosed patients have been receiving anti-epileptic medication to control the seizures, along with nutritional supplements, including vitamin B complex.
Of the 2,775 identified cases, 321 were severe enough to require hospitalization, according to Bernard Opar, the health ministry’s co-coordinator for nodding syndrome. He said many of those children had been suffering from the syndrome for years and were bedridden and suffering from severe wasting. All but a handful of those patients have now been discharged.
“You can see that there is some success,” he said. “You can see that their cognitive functions are coming back.” Reports showed that 15 patients have been able to reenrol in school, he added.
The ministry is sending teams of physiotherapists and speech therapists to affected areas to help patients regain motor and speech skills as their conditions improve.
Hunt for a cure
The success in controlling the syndrome’s symptoms has not halted the search for a cause and possible cure.
Health officials suspect the syndrome might be linked to onchocerciasis, or river blindness, a parasitic disease transmitted by black flies. Opar said have officials confirmed that the government will begin to spray black fly breeding sites within the next two weeks. They will also do a second-round distribution of onchocerciasis treatment in endemic areas next month.
Researchers also now have access to the brain tissue of a nodding syndrome patient, who died of sepsis after his bedsores became infected. It is the first time the family of a deceased patient has allowed a post-mortem examination.
Opar said the examination process will likely take months and the results may not be definitive, which means the ministry’s primary goal remains “managing the symptoms and stopping further deterioration of the patients”. He said the country continues to requisition anti-epileptic medication and is prepared to keep patients on it until they have been seizure-free for at least two years.
Health system shortcomings
The monitoring of patients presents a challenge. Nearly 40 percent of public health positions in the country remain vacant, and among filled positions there is frequent absenteeism.
In late October, in northern Uganda’s Pader District, 16 health workers – all of whom had been trained to handle nodding patients – went on a sit-down strike over having gone unpaid since September. Pader is one of the most heavily affected of six northern districts reported to have cases of nodding syndrome. More than 1,000 patients access treatment at the clinic, and many had been scheduled to come for check-ups or medication on the days of the strike, according to Alfred Akena, the district chairperson.
“They closed the outreach programme on days when it was meant for patients to receive drugs,” he said. Akena and other district leaders were able to convince the workers to reopen the programme after two days.
The Ministry of Health is also contending with widespread misinformation about the disease.
Earlier this month, local media reported cases of nodding syndrome at a primary school in the southwestern Masaka District. Education officer Joseph Lutaaya said nine girls at the school reported uncontrolled shaking in their hands. They were sent to a local hospital for treatment.
“The children have been affected by unknown things. They are shaking all over,” he said.
They did not display any of the accepted signs of nodding syndrome, but Lutaaya said people in the region were not familiar with the syndrome’s symptoms, which may have prompted local media to report an outbreak.
“People start saying, ‘This is nodding’ when they see someone having an epileptic seizure or other kinds of convulsions,” Opar said.
While it is unlikely Masaka is dealing with nodding syndrome, Opar said the ministry would continue to send teams to investigate possible outbreaks that are reported.
“The government of Uganda is committed to providing whatever it takes. If it has to, it will beg and make sure there is enough money,” he added.
[This report does not necessarily reflect the views of the United Nations]