Nodding Disease: One More Blow!

22 Apr

Just when it seemed like the families in northern Uganda could rest somewhat easier because their children were no longer being victimized by the combatants in a brutal civil war another serious danger has emerged to take its place. It’s called The Nodding Sickness by the villagers who named it based on the physical symptom of uncontrolled nodding displayed at the onset of this disease in both male and female children. The World Health Organization (2012) estimates that about 4,000 children have already been infected with this disease and that the infection rate among the children in northern Uganda and South Sudan is increasing rapidly.

The disease seems to only affect children and young people between 1 and 19 years of age, with the worst of the symptoms occurring between the ages of 3 and 11. This data had been already gathered by health workers in this region. It begins in children at about 4 or 5 years of age with the initial symptom described as staggered bouts of uncontrolled and constant nodding of the head; sometimes this action continues uninterrupted for several hours. At about eight or nine years of age more severe seizures commence. These fits begin to resemble epileptic seizures and can be triggered by a host of different things which can vary from child to child. In some children the seizures are brought on by subjecting them to different things such as new foods to eat or when the weather abruptly changes like right before an afternoon thunder storm. In some the seizures occur without any reasonable explanations at all.

As they age these children seem to fade away and are made physically and mentally weaker with every fit they must endure. Over time they become incapable of feeding or washing themselves and are more and more dependent on their families for support as if “they had become babies all over again”. Over time their unique personalities vanish and they take on zombie-like demeanors. Little by little they descend into their own painfully, private worlds, many simply lying down stretched across floor mats or upon the ground for hours, incapable of speaking or of communicating beyond simple grunts and moans. This progressive and debilitating disease leaves them talentless, with only the shells of their former bodies left to attest to their once vital lives. In the end it destroys any chance they once had of becoming productive members of their family, their village, their tribe,their country.

Many children have died from disease- related accidents such as infections from first degree burns as a result of falling into campfires and cooking fires or from trumatic brain injuries caused by blows to the head or fatal falls. As the disease progresses these children simply do not have the fine or gross muscle cordination to move themselves away from dangerous situations. Some children have wandered off alone into the bush and eventually died  from severe dehydration or starvation. Others have been eaten by wild animals expecially the ever-vigilant baboons while most villagers have heard the moving accounts reported on the local radio broadcasts about courageous village dogs who have gone out and found these children only to drag their limp bodies all the way back to their compounds in order to drop them at the entrance to their front doors. 

It has been named Nodding Disease by the National Center for Disease Control (CDC) located in Atlanta, Georgia. The organization was petitioned by both the governments of Uganda and South Sudan to come and help out in any way it could. It has already sent out several teams of researchers and physicians into the region between Northern Uganda and South Sudan to help find the cause and a possible cure for this disease. As of April 2012, no one knows just what is causing this disease, what medications are needed to cure it, what medications are needed to successfully treat it, or how to prevent infections in other children. The cause of this disease has been blamed on viruses, pesticides, fungi, vitamin deficiency, monkey meat, and parasites but none of these have been decisively proven to bring on the illness. Medical doctors in the area have currently started prescribing drugs used to control epilepsy to treat the illness with limited success; these medications only slow down the progression of the symptoms, they do not halt the natural course of the disease.

Right now the front-runners favored by the scientific investigators are:

1.)  Onchocerca volvulus, a  parasitic worm carried by the Black Fly and also known to cause Onchocercias, (Robles’ Disease) or what the locals refer to as “ River Blindness”. If left untreated the parasite can cause blindness in adults and children. The worm is commonly found throughout Northern Uganda and South Sudan and is commonly found in the bodies of adults and children in this area. World Health Organization officials say 93% of cases of The Nodding Disease are found in areas where this particular parasitic worm and the Black Fly are found. But the research teams have also discovered that children can be infected with Nodding Disease when there is no evidence of this parasite in their bodies or in their spinal and brain fluids. “A 2008 study found, for example, that out of 51 patients with head nodding (some with just nodding, others with more advanced seizures), 43 had traces of O. volvulvus in their bodies, but none of them had evidence of it in their spinal or brain fluid”.

2.)  A possible Vitamin B-6 deficiency, some people who have a genetic mutation within their bodies that reduces B-6 uptake have been known to suffer from severe epilepsy. Currently the teams have established that the children diagnosed with Nodding Disease that were used in their studies did not have the extremely low levels of Vitamin B-6 needed to cause such severe seizures. The CDC teams do intend to include B6 supplements and anti-seizure medications in their next set of research trials though.

The disease has also taken its toll on the adult members residing in the cities and villages. Many families have had to stop farming their fields at the edge of the compounds in order to provide constant care for their children. If they cannot farm they will in turn have very little to eat. Some families have been ostracized by other villagers who now fear the disease and the infected children especially now that the American doctors have said that they can do nothing to cure it. Other residents think that Nodding Sickness is the new “AIDS” and feel that maybe the disease came out of the Displacement Camps in which they were made to live during the civil war. By the year 2004, at the height of the civil war 90% of the population, nearly 2 million people in Northern Uganda were living in one of 180 different “Internal Displacement Camps”(IDC). Others think that the disease was caused by an evil spell cast upon the people of this area by a vengeful Kony because they “turned their backs on him”. Still others think that it might be a plague like Ebola but “a plague that’s just for children” and that maybe their children can catch it from the ones who have already gotten sick.

In a heroic effort the CDC researchers have publically stated that they intend to continue on with their investigative research until the cause and cure of this disease has been found especially now that the infection rate seems to be on the rise. They have also agreed to collaborate on “new and more successful courses of treatment” with health workers in clinics and hospitals around the area. The government of Uganda has promised to provide adequate quantities of anti-seizure medications and has pledged their continued support until the origin of this mysterious illness has been discovered.

Scared people become mean people and the transition takes place real fast. They hide their fear behind outbursts of righteous anger and look for something or more likely, someone to blame. Rather than bring the villagers together, this mysterious disease may be driving them further apart at a time when they desperately need to work as one in order to improve their lives, re-establish their tribal cultures, create a new sense of community beyond “the displacement camp mentality”, and design a meaningful course of action for the entire region no longer dominated by the dictates of well-meaning NGO’s and the orders of armed government troops. I will visit Gulu and Lira while in Uganda this June of 2012 and will be sure to keep you informed about this more recent crisis in the north.  

Kat Nickerson      Kingston, RI          USA

If you are interested in this topic read the most current report about the CDC in the latest issue of Science Magazine or watch this video.

Science13 April 2012:
Vol. 336 no. 6078 pp. 144-146
DOI: 10.1126/science.336.6078.144


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