tagged w/ Nodding Syndrome 2012
June 8, 2012
By JOSH KRON, New York Times
OJURU, Uganda — Haunted by a merciless and debilitating disease that doctors cannot cure, villagers in this remote enclave in northern Uganda have turned to traditional healers like Alfred Ojara.
On a recent day, Mr. Ojara delivered a bitter elixir of water and vine root to the tiny contorted hands of Charles Okello, 12, and a line of other child patients supported delicately by their parents under the shade of a duru tree.
“Sometimes there will be decline,” he warned as he held up a plastic baggie of powder and recommended two doses a day. “All in all, if you stick to this one here, you will get improvement, no doubt.”
But when it comes to nodding disease, a mysterious ailment that has stalked the brains and nervous systems of thousands of children in this part of Africa, there is considerable doubt. It is a little-understood disease, dating back years, that stunts growth, causes mental retardation and sets off sudden seizures. No one knows what causes it, and it appears to attack only children, who lose their appetites, grow frail and slowly waste away.
Despite striking in a region receiving considerable foreign development aid, nodding disease has confused medical professionals. It was long misdiagnosed as epilepsy or as river blindness. Since being identified, it has been forced to compete for public health attention with other nettlesome illnesses, like malaria, tuberculosis and H.I.V./AIDS. In the meantime, it has killed more than 200 Ugandan children since January, health officials say.
The Centers for Disease Control and Prevention has sent teams of experts to Uganda to research the disease, but for the young victims, there is little help to be found. Special treatment centers are sometimes more than a day’s walk away. And batch after batch of medicine has failed to slow the symptoms. A regional hospital recently sought $200,000 to combat the disease, but received less than $4,000. A health-rights organization just sued the Ugandan government, saying it broke laws protecting human and child rights by responding in such a lethargic way to the disease.
“The attention of everyone has gone to malaria,” said Dr. Nathan Onyachi, director of the hospital in Gulu, Uganda, and a chief strategist on efforts to respond to the disease. “H.I.V./AIDS has taken all the doctors.”
“We have to go back to the drawing board,” Dr. Onyachi said. “There is no money.”
So traditional healers like Mr. Ojara are offering makeshift remedies.
A longtime botanist who is under police investigation and claims he can cure AIDS, Mr. Ojara, 50, has been roving the soggy, mosquito-laden countryside where he grew up, consulting under trees with desperate parents of stricken children and prescribing doses of his homemade powder.
Mr. Ojara said he had treated more than 100 children for nodding disease. And he has a line for each etched in his blue notebook, with names, parents’ names, ages, addresses and symptoms.
Uganda’s Health Ministry is running tests to determine if Mr. Ojara’s treatments have any beneficial effect. Even without any proven results, though, patients with few other options line up to see him.
Charles Okello’s father brought him because he had little faith in the special treatment centers aimed at those with nodding disease. The mother of Stella Akello, 12, said she had had no luck controlling the symptoms at various health clinics and had heard that Mr. Ojara was passing through.
Whether he is helping or not is difficult to determine, say those who are paying $2 to $4 a visit to see him. Charles Okumu’s daughter, Mercy, improved shortly after taking Mr. Ojara’s mixture, although he said he was not certain the herbs were the reason.
“He is confusing the community,” said Ambrose Ssabiti, a local police official who is working to compile files on Mr. Ojara to charge him with administering false drugs and subverting a government health program.
http://www.nytimes.com/2012/06/09/world/africa/ugandans-turn-to-healers-for-mysterious-nodding-disease.htmlJune 8, 2012
By JOSH KRON, New York Times
OJURU, Uganda — Haunted by a... more
11 months ago
KONY 2012 is a film and campaign by Invisible Children that aims to make Joseph Kony famous, not to celebrate him, but to raise support for his arrest and set a precedent for international justice.KONY 2012 is a film and campaign by Invisible Children that aims to make Joseph Kony... more
It is deadly and indiscriminate. And it is killing children across northern Uganda and South Sudan.
But I'm not talking about Joseph Kony's Lord's Resistance Army which, despite its sudden brush with global infamy, has not been seriously active inside Uganda for some six years.
I'm referring instead to a mysterious disease that I first encountered in the region in 2003. It is called Nodding Syndrome, and I was shocked to discover this week that nearly a decade since it was first detected, almost no progress has been made in identifying, treating or containing the disease.
Nodding Syndrome targets children exclusively, causing its victims to spasm uncontrollably and eventually to waste away and die. Many thousands of children are believed to be affected.
Scott Dowell - an American doctor I was in contact with in Asia where he was involved in the global battle against bird flu - is now helping the Ugandan authorities to fight Nodding Syndrome.
"It's frustrating not knowing the cause. I was hopeful for a quick answer when we first started studying the disease in 2009," he told me, on the phone from the Centers for Disease Control and Prevention (CDC) in Atlanta, USA.
Instead, like several other neurological disorders, Nodding Syndrome remains a complete mystery. "It could take a while to crack this," he admitted.
Initially, the CDC suspected it might be a psychogenic episode - something like mass hysteria. But brain scans quickly confirmed that they were dealing with a disease that causes measurable brain atrophy.
http://www.bbc.co.uk/news/world-africa-17319434It is deadly and indiscriminate. And it is killing children across northern Uganda and... more