When nodding means dying

South Sudan- It sounds like a place stricken by a biblical plague- disease after unimaginable disease, all come to rest in one pitiful region of a vast African country. Worms oozing out of people’s feet; two kinds of flies whose bites cause death in a bizarre ways; a baffling syndrome that throws children into seizures and retards their development before it ultimately kills them. While some of these devastating diseases can be found scattered around the world’s poorest places, it feels like that in Southern Sudan, they are all seen together in one country at the same time. This really is the forgotten front line when it comes to health. Southern Sudan is one of the poorest and most neglected areas on earth, with possibly the worst health situation in the world. There are, in essence, no health care system; humanitarian groups provide nearly all the doctors and medicine. This is what I have seen and felt during my six months in S.Sudan, working as a medical doctor in an African Trypanosomiasis (Sleeping Sickness) Project with Médecins Sans Frontières. Mystery Epidemic- The newest and the most mysterious scourge on the beleaguered people of southern Sudan is “nodding syndrome,” which has been reported nowhere else in the world and seems to be head nodding when a child is eating. Researchers have found that the nodding occurs when children are fed the local diet of starch and beans. Candy bars, power bars and candy itself do not seem to have any effect. “Nodding disease,” as aid groups have dubbed the illness, progresses to severe epileptic seizures. Many of the children also have stunted growth and become mentally retarded.  This nodding syndrome is fatal. “Few survive into twenties.” Isolated and underdeveloped, the region is no stranger to exotic diseases, including river blindness and sleeping sickness. Missionaries first encountered nodding disease in 1997, but locals say it has been around since the 80’s.Its spread was likely helped by the 20-year old civil war; perhaps when Sudanese refugees with no immunity contracted the ailment. Nodding disease has so far been found only in a small area, where a 2002 survey estimated, it affected 6% of children in one town. A variety of hypotheses about the etiology or cause of disease has been advanced, but none has been proven. Superstitious villagers claim that the disease is a curse. Others claim 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 ammunitions 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. However, 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 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 fleshes, which the infected villagers eat, but which nearby disease-free tribes in the region do not. However experts from WHO failed to turn up any conclusive evidence. Another theory is that the cases have been concentrated around the Yei River, which arouses the suspicion 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, which suggests that the two diseases may be related. This link is still being hotly debated and investigated. According to some parents, the disease attacks most when “the moon is new” and when the weather is cool, with no diurnal variation. As far as treatment part is concerned, some hospital gives the common anti-epileptic drug Phenobarbital for the duration of the illness and, for a shorter time, malaria drugs. Nevertheless, what is learned from the parents is that the drugs have not worked for everybody. Many children have just continued to deteriorate. 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 attempt to get to the root of problem. Preliminary neurological and EEG investigations support the hypothesis that nodding syndrome could be a chronic, progressive, degenerative neurological disorder. 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.

Indian doctor Rhitam CHAKRABORTY joined MSF in 2005. From April to October 2005, he worked in sleeping sickness treatment project in Kotobi, South Sudan for his first mission. Then he worked in Ambon, Indonesia for 17 months. He left for Ethiopia for his third mission (five months) with MSF in September 2007.