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When Nodding Means Dying
A baffling new epidemic is sweeping Sudan.
By Lekshmi Santhosh
Recent reports of nodding disease are not referring to the malady of American apathy toward the policies of its government Ð rather, to a deadly illness so new that scientists have not even officially named it. This new and fatal epidemic, concentrated in southern Sudan, is afflicting mostly children under the age of fourteen. BBC reporter Andrew Harding writes that when presented with food, they nod their heads uncontrollably "as though someone is forcing their chins down onto their chests." Irrepressible brain seizures cause the neck violently to arch back and forth, and victims ultimately suffer from stunted physical growth and irreversible mental retardation. Ben Parker, spokesman for the U.N. humanitarian coordinator for Sudan, considers the disease to be 100% fatal, with few affected children surviving into their twenties.

The history of the illness, like the disease itself, is shrouded in doubt. It seems to be highly localized, with the 300 afflicted children coming from the two towns of Amadi and Lui near the Yei River in southern Sudan. Locals claim to have seen cases of nodding disease since the 1980's, but missionaries like Dr. Warren Cooper of Samaritan's Purse first reported the disease to public health authorities only in the late 1990's. In response to a 2002 survey warning the World Health Organization (WHO) about the implications of this devastating disease, teams of neurologists, epidemiologists, and doctor-detectives have been on the scene in southern Sudan, collecting blood samples and performing EEG tests in attempts to get to the root of the problem.

A variety of hypotheses about the etiology of the disease have been advanced, but none has been proven. Superstitious villagers claim that the disease is a curse. Others claim that the Sudanese government attacked the area with chemical weapons during the civil war that has ravaged the country since 1983, causing the nodding. Yet another group believes that munitions left over from the civil war have left toxic residue in the earth and resulted in brain damage to local inhabitants. However, speculation of this sort has been almost completely ruled out by United Nations toxicology reports, which show minimal evidence of toxic waste. Some scientists surmise that the war's brutal fighting displaced the residents of small Sudanese villages, leading them to eat whatever they could find and to sleep in the open, and thus making them prone to local food-borne diseases. But United Nations reports of 2002 have downplayed, and almost ruled out, this hypothesis as well.

Another theory blames international relief agencies: the explosion of the disease in the 1990's coincides with the time when these agencies moved into the region, issuing seeds coated in toxic substances designed to aid crop growth. Despite warnings that the seeds were not fit for consumption, some desperate locals ate them, thinking them food. Alternately, nodding disease has been hypothetically linked to the consumption of monkey flesh, which the infected villagers eat, but which nearby disease-free tribes in the region do not. Peter Spencer, a WHO toxicologist, went to Sudan to explore this hypothesis in 2002 but failed to turn up any conclusive evidence.

Currently, the most compelling theory is the one advanced by Dr. Mickey Richer, pediatrician and tropical disease specialist from UNICEF. Noticing that the cases have been concentrated around the Yei River, she suspected that nodding disease is connected to river blindness, also prevalent in the area. 93% of the victims are also infected with the parasitic river-breeding worm that causes river blindness, a far higher percentage than children without nodding disease, which suggests that the two diseases may be related. This link is still being hotly debated and investigated.

Nodding disease continues to baffle scientists from all over the world, who not only continue to search for its cause, but also to explain its bizarre characteristics. Though the nodding is typically set off by food, children appear unaffected by foreign foods brought in by researchers, and sometimes begin to nod when the ambient temperature is sufficiently cold. Ultimately, the fatality of the disease dictates that it be researched vigorously, in order to treat those affected, to prevent it from continuing in the region, and to make sure that it cannot spread elsewhere.

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© Copyright 2004 P.H. The Yale Journal of Public Health. All rights reserved.