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Terzake Knikkebolziekte (2013)

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Scientists may have solved the mystery of nodding syndrome, a rare form of epilepsy that has disabled thousands of children in East Africa.

The syndrome seems to be caused by the immune system's response to a parasitic worm, an international team reports in the journal Science Translational Medicine. And they think it's the same worm responsible for river blindness, an eye infection that's also found in East Africa.

The finding means that current efforts to eliminate river blindness should also reduce nodding syndrome, says Avi Nath, an author of the study and chief of the section of infections of the nervous system at the National Institute of Neurological Disorders and Stroke.

The adult form of the O. volvulus worm, which causes river blindness and may also be responsible for nodding syndrome.
Courtesy of Dr. Thomas B. Nutman/NIAID/NIH

"We can prevent new infections even if we can't treat the ones who already have nodding syndrome," Nath says. Drugs can kill the parasite in its early stages.

Nodding syndrome usually strikes children between 5 and 16 who live in rural areas of northern Uganda and South Sudan. Their bodies and brains stop growing. And they experience frequent seizures.

"These are kids, young kids, you would expect that they should be running around playing," says Nath, who visited Uganda several years ago. "Instead, if you go to these villages they are just sitting there in groups," so villagers can keep an eye on them.

The epileptic seizures weaken muscles in the head and neck. "So their heads tend to fall forward," Nath says. "And because that happens repeatedly as part of the seizure, it is termed nodding syndrome."

Researchers have struggled to find a cause for the syndrome since it was first documented in Tanzania in the 1960s. "We thought it might have to do with toxins, chemicals in the environment or nutritional deficiency," Nath says.

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