Traditional healer claims to cure nodding disease

Alfred Ojara is an unassuming man in his demeanor, not his words. Armed with nothing but a clear plastic bag of light brown powder and a spoon to dole it out, he says he has been able to relieve painful symptoms where government-provided drugs have failed.

“I am now paving the way to alleviating these diseases,” the herbalist says.

For the past 20 years, Ojara says he has been curing his home district in Pader of various ills. And from malaria to meningitis to malnourishment, he says his herbs have worked wonders – restoring appetite, ridding patients of fevers and more.

But it is his claim to cure nodding disease that has not been verified, and is now dividing authorities. While some local officials have been known to visit him for treatment themselves, others have threatened to have him thrown in jail.

“He is a criminal,” said Dr Bernard Opar, the Ministry of Health (MoH) coordinator for Nodding Disease. “He’s extorting money from people and he doesn’t know what he is treating.”

Ojara says he usually charges Shs2,000 to Shs5,000 for treatment, and that he has never received more than Shs10,000, for a group. He says he adjusts to how poor the family is – those worst affected by the disease are in the poorest, most rural areas of northern Uganda.

Last month, the herbalist visited the children of Ojoro village in Pader for a group treatment. Children were brought to see him from surrounding huts in varying conditions – some were frail and weak, and succumbed to the disease’s debilitating seizures. Some looked no different from a healthy child. But a handful of children in the small crowd gathered around Ojara – and one by one, were given a concoction of the ground root of a local vine mixed with water.

This is not the first time Ojara has treated children from this village. Charles Okumu says his daughter recovered from the disease after getting treatment from the herbalist last year – though he had also taken her to a clinic months earlier, and couldn’t be sure which one to thank.

Regardless, it has been more than six months that she’s been well – making a remarkable comeback from the desperate bouts of delirium and physical disability, he says.

“When food was brought she could not even raise her hand to get it,” Okumu says.

Today, she is back in school, running and playing with her friends in the fields. It is enough for him to have passed on the word to his neighbors, who have not seen the government drugs work for their children, and are desperate for a miracle of their own.

Nodding syndrome is a progressive disease that attacks with seizures, normally characterised by an uncontrollable nodding of the head. They ultimately render children physically and mentally disabled, and become fatal for most.

“It has reached the point where she doesn’t know anything, she cannot even understand,” says Margaret Atto of her 12-year-old daughter Stella.

For Stella, it was four years of Western medicine, with no change. Atto is a widow and has no one to help her take the child to hospital or care for her at home. Even when she went to the hospital, she would spend more than six hours waiting for few tablets.

“No health centre does not help with this sickness,” her mother said. “I am stranded.”

Many people from this heavily affected village have tried health centres, but are finding Ojara’s cure treats their children’s symptoms just as well – without the grueling journey.

Nathan Onyachi, director of Gulu Regional Referral Hospital, says without better reach or finding a cure itself, government cannot stop traditional healers from trying to do the same – and that all of them will want to try their hand.

“When you’re not yet an authority, then you cannot stop others from doing what they want.”

But police say they can. Ojara tells his patients to stop taking Western medication and to replace it with his instead, and it is that blatant disregard for the government’s effort that seems to be ruffling so many feathers.

“There is no law in Uganda which stops him from practicing,” says Ambrose Sabiti, the Police Commander for Pader District. “But if his claims stop a government programme – that’s when he conflicts with the law.”

If police find evidence of extortion or that Ojara has been endangering lives, Sabiti says this would be his first time to arrest a traditional healer – who are often trusted residents of the area, and a cheap and accessible option that is already the first choice for up to 70 per cent of the population.

MoH actually has a research arm into herbal medicine – the Natural Chemotherapeutics Research Laboratory (NCRL) in Wandegeya,which performed a toxicity test on Ojara’s drug in 2011, and deemed it safe.

The lab has recognised the potential benefits of working with traditional healers in the past – whose herbs have been found to ease a host of symptoms, such as fever and even sexual impotence. In terms of reach, they are miles ahead.

The NCRL estimates that there is one healer for roughly every 300 people, while there is only one trained medical personnel for every 20,000.

Diseases are more often than not treated by a combination of the two methods – and this relationship can go one way or another. Onyachi cites traditional bonesetters as being the most troublesome for hospital staff – patients often come in with fractures after being treated by them, and have to be refractured or can end up lame.

Numbers game
As the number of children with nodding disease continues to soar, so has criticism of the government’s response. Some estimate the true number of children affected to be closer to 7,000, and suggest the government is stifling the districts from releasing a true picture, as it would force funding they do not have.

“I wouldn’t want to say that the government has the accurate figures as such, because there hasn’t been any significant funding directly into nodding disease,” Dr Onyachi said.

Government has committed nearly Shs7bn to relieve the sufferers over the next two years, half of that is to be used in this year’s “emergency phase”, which consists of providing medication, food, psychosocial and livelihood support – among others.

Specialised treatment centres in the three most affected districts – Pader, Kitgum and Lamwo – were only set up in March of this year. They see hundreds of patients a day, and continue to prescribe the recommended treatment of anti-epileptic drugs. Some food has been provided as well, but anything beyond that has been patchy, with outreach taking the hardest hit – vehicles were only provided last month.

“If somebody cares to take these people for regular treatment, the medicine is available,” says Dr Onyachi.

Onyachi cites the effective communication system used in HIV/Aids treatment. The huge swell of funding into that field has allowed for a network that Nodding Disease now needs to model.

We have to create a system of communication – either using the village health teams, the community health workers, using the telephones that are now so prevalent – to follow up on these patients,” he said.

“And this is being done with HIV/Aids because there is money, in Nodding Disease there is no money to do that.”

Government is now facing two separate lawsuits for failing to mount an effective response, one of them from Beatrice Anywar, the opposition politician who has been spearheading the campaign against the government.

“Most of these children are in their homes and cannot leave – government is not doing outreach,” she said.

Nodding Disease coordinator Opar responds to the challenge in a rush, “People are talking about outreaches, outreaches, outreaches. You know sometimes I also ask myself – if you are sick, why would you sit and wait for somebody to come and treat you?”

For Pamela Atim, a widow, it is because her 15-year-old daughter has had the disease for more than half of her life. She has never been to school because of it. She cannot walk on her own and a trip to the health centre would take more than a day – Atim had to guide her just 20 feet from their hut on the day they saw the healer.

“I don’t even know how to ride a bicycle, it was my husband that used to carry us to the health centre,” she said.

Ojara says as long as children from his home district are suffering, he will continue to treat them – regardless of what authorities say.

“You are being mocked, you are being kicked like a ball in the football field,” he says of the treatment he has received at times for his claim to a cure. Even his own children do not believe in his work, but still he carries on.

“I should be with the people, down there.”

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