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CDC planning trial for mysterious nodding syndrome
World Report
CDC planning trial for mysterious nodding syndrome While the cause of nodding syndrome in Africa continues to perplex scientists, they are hoping to soon unravel one mystery: which treatments the disease might respond to. John Donnelly reports.
www.thelancet.com Vol 379 January 28, 2012
associated with malnourished children or young adults who have a vitamin B6 deficiency. Some epidemiologists have suggested that climate change could have played a part, especially if the disease is definitively linked to the parasite causing river blindness and the range of the parasite is expanding. But Dowell said many questions remain. One question is if that parasite is connected to the epidemic, why has it in the past attacked people’s corneas, while now it is attacking the brain.
“‘All the children look like they have cerebral palsy. So many of the kids are malnourished...’” Children who come down with nodding syndrome often lose their ability to interact normally, lose their attention span, and cannot feed themselves. Some children die, but many of the cases are related to seizures, including drownings and getting burned by fires. “The children have a real cognitive decline”, Dowell said. “These were healthy, growing kids, as young as 5 or 6 years old who once they get this, they waste away, they are malnourished, they drop out of school, and they become completely dependent on their caregivers.” Last year, when The Lancet visited Witto Payam, a community in South Sudan, nodding syndrome had created a village of vacant children. Some 70 children with the disease gathered in a small clearing in the centre of the community. They sat next to their parents, or each other. Each seemed distracted. Some used sticks to draw lines in the ground. Some leaned on an adult. One girl was asleep in the dirt. “My daughter was a normal girl, and then at age 6 [years], she started
nodding whenever she saw food”, said Rasul Kegi, a mother. “3 years later, she started convulsing. Her mental ability is so diminished. Even when I call her sometimes, she doesn’t respond.” Fred Hartman, Management Sciences for Health’s Country Lead for South Sudan and supervisor for the USAIDfunded Sudan Health Transformation Project II, has worked for 30 years in Africa, but when he first saw children with nodding syndrome in 2010 he was shocked. “I’ve been all over the world, and I’ve never seen anything like it”, he said. “All the children look like they have cerebral palsy. So many of the kids are malnourished. You bring them food and they can’t eat it. And by the time you make the diagnosis, it’s too late for the children. It’s really sad.” Dowell called the CDC’s upcoming investigation important. “We are in the business of detecting outbreaks. For the most part, when we investigate an outbreak, the cause becomes clear, but periodically we get these ones where the cause isn’t clear”, he said. Asked where nodding syndrome stood on the list of mystery outbreaks, Dowell said: “It’s right there at the top of the list.”
Management Sciences for Health provided funding for JD’s reporting trip to South Sudan in 2011
John Donnelly
Dominic Chavez
A mysterious illness affecting mostly children called nodding syndrome is spreading across wide swaths of northern Uganda and South Sudan, stumping investigators who have failed so far to determine what is causing the disease that gives young people epileptic-like seizures and impairs their cognition. A team of scientists from the US Centers for Disease Control and Prevention will be travelling to the region in mid-February for their fourth such exploration; this time, they hope to lay the groundwork for a clinical trial to test treatments for the disease. “It is a devastating disease from the patient’s point of view and the villagers’ point of view”, said Scott Dowell, director of CDC’s Division of Global Disease Detection and Emergency Response, and the lead investigator on nodding syndrome. “It’s been so difficult to figure out what is causing it and what should be done about it.” In northern Uganda, the current cases are in the districts of Kitgum, Pader, and Gulu. Ugandan officials say that in Pader District alone nodding syndrome is the cause of death for 66 children. They have diagnosed roughly 1000 cases between August and December, 2011. There is no known cure for the disease, and investigators do not know if it is communicable. Researchers have been examining several possible causes for nodding syndrome, a name given because those infected often nod their heads when food is put in front of them. They have found an unexplained association with Ochocerca volvulus, a parasite that can cause river blindness; tests have shown that high numbers of those with nodding syndrome also have antibodies in their system for Ochocerca. Nearly all the children live near rivers or fastmoving streams. The disease also is
Many of the children in Witto Payam village, South Sudan, have nodding syndrome
299
CDC planning trial for mysterious nodding syndrome While the cause of nodding syndrome in Africa continues to perplex scientists, they are hoping to soon unravel one mystery: which treatments the disease might respond to. John Donnelly reports.
www.thelancet.com Vol 379 January 28, 2012
associated with malnourished children or young adults who have a vitamin B6 deficiency. Some epidemiologists have suggested that climate change could have played a part, especially if the disease is definitively linked to the parasite causing river blindness and the range of the parasite is expanding. But Dowell said many questions remain. One question is if that parasite is connected to the epidemic, why has it in the past attacked people’s corneas, while now it is attacking the brain.
“‘All the children look like they have cerebral palsy. So many of the kids are malnourished...’” Children who come down with nodding syndrome often lose their ability to interact normally, lose their attention span, and cannot feed themselves. Some children die, but many of the cases are related to seizures, including drownings and getting burned by fires. “The children have a real cognitive decline”, Dowell said. “These were healthy, growing kids, as young as 5 or 6 years old who once they get this, they waste away, they are malnourished, they drop out of school, and they become completely dependent on their caregivers.” Last year, when The Lancet visited Witto Payam, a community in South Sudan, nodding syndrome had created a village of vacant children. Some 70 children with the disease gathered in a small clearing in the centre of the community. They sat next to their parents, or each other. Each seemed distracted. Some used sticks to draw lines in the ground. Some leaned on an adult. One girl was asleep in the dirt. “My daughter was a normal girl, and then at age 6 [years], she started
nodding whenever she saw food”, said Rasul Kegi, a mother. “3 years later, she started convulsing. Her mental ability is so diminished. Even when I call her sometimes, she doesn’t respond.” Fred Hartman, Management Sciences for Health’s Country Lead for South Sudan and supervisor for the USAIDfunded Sudan Health Transformation Project II, has worked for 30 years in Africa, but when he first saw children with nodding syndrome in 2010 he was shocked. “I’ve been all over the world, and I’ve never seen anything like it”, he said. “All the children look like they have cerebral palsy. So many of the kids are malnourished. You bring them food and they can’t eat it. And by the time you make the diagnosis, it’s too late for the children. It’s really sad.” Dowell called the CDC’s upcoming investigation important. “We are in the business of detecting outbreaks. For the most part, when we investigate an outbreak, the cause becomes clear, but periodically we get these ones where the cause isn’t clear”, he said. Asked where nodding syndrome stood on the list of mystery outbreaks, Dowell said: “It’s right there at the top of the list.”
Management Sciences for Health provided funding for JD’s reporting trip to South Sudan in 2011
John Donnelly
Dominic Chavez
A mysterious illness affecting mostly children called nodding syndrome is spreading across wide swaths of northern Uganda and South Sudan, stumping investigators who have failed so far to determine what is causing the disease that gives young people epileptic-like seizures and impairs their cognition. A team of scientists from the US Centers for Disease Control and Prevention will be travelling to the region in mid-February for their fourth such exploration; this time, they hope to lay the groundwork for a clinical trial to test treatments for the disease. “It is a devastating disease from the patient’s point of view and the villagers’ point of view”, said Scott Dowell, director of CDC’s Division of Global Disease Detection and Emergency Response, and the lead investigator on nodding syndrome. “It’s been so difficult to figure out what is causing it and what should be done about it.” In northern Uganda, the current cases are in the districts of Kitgum, Pader, and Gulu. Ugandan officials say that in Pader District alone nodding syndrome is the cause of death for 66 children. They have diagnosed roughly 1000 cases between August and December, 2011. There is no known cure for the disease, and investigators do not know if it is communicable. Researchers have been examining several possible causes for nodding syndrome, a name given because those infected often nod their heads when food is put in front of them. They have found an unexplained association with Ochocerca volvulus, a parasite that can cause river blindness; tests have shown that high numbers of those with nodding syndrome also have antibodies in their system for Ochocerca. Nearly all the children live near rivers or fastmoving streams. The disease also is
Many of the children in Witto Payam village, South Sudan, have nodding syndrome
299