Nodding Disease in Uganda: The Villagers Speak Out!

2 Jul

What if a one quarter of the children in towns across the northern portion of the United States were physically wasting away and had lost one half to three quarters of their previous levels of intelligence after contracting an unknown disease? What if it had been determined that the loss in their mental faculties and motor skills could never be restored? What would citizens in other regions of America do to help?

Would they question why these children were not being given the health care and community services they so badly deserve? Would they petition their senators and congressmen to do something immediately to help find both the cause and a cure of this mysterious disease? Would they demand that the President declare this section of the United States a national disaster area? Would they keep fighting until they had been heard and the children had been sent to the proper medical facilities? Would they see to it that arrangements had been made for their families and their future?

As outrageous as this situation sounds it is not the plot for a new television series but is actually happening to at least 4,000 children in northern Uganda- maybe 7,000 children if the newest estimates are correct. They have been diagnosed with what has been officially labeled as “Nodding Syndrome” but most people in the north refer to it as “The Nodding Sickness” or “Nodding Disease.”

I traveled to the city of Gulu, one of the largest towns in Northern Uganda, at the beginning of last month to find out more about this illusive disease and the reasons why the government has taken so long to provide effective health care to these children. I traveled with other professionals from Kyambogo University, one of whom was originally born in this area. Members of his family still live there. We were able to visit villages and schools in the area and hear from the people about how they felt. I got to interview them and hear what they believed might be the cause of this disease.

First some background information: The districts with the most cases of Nodding Disease are Gulu, Kitgum, Lamwo, Pader, Agago, and lately new cases of Nodding Disease have been reported in the villages of Polaro, Atiak, and Odek (all in Gulu district).

Northern Uganda went through a twenty year civil war beginning in the year 1986 and ending in 2006 although some of the villagers still believe that it continued on until 2008. Various rebel armies fought it out with the Ugandan Army called the Ugandan People’s Defense Force (UPDF) until the war seemed to peter out in 2006. The most famous of these was the Lord’s Resistance Army lead by Joseph Kony. Both Kony and his soldiers were members of the Acholi tribe, the largest tribal grouping in northern Uganda. By 2006 Kony and his men had left northern Uganda for good and headed into the northeast section of the DRCongo where they presently cover an expanse of territory which takes them from the  DRCongo, to South Sudan, and then into the Central Africa Republic. Because Kony kept kidnapping the young Acholi boys and girls in northern Uganda to serve as soldiers and wives in his army the Ugandan government forced all residents living in the north into Internal Displacement Camps. By the middle of the war two million people had been placed in 180 separate Internal Displacement Camps in order to keep them safe from the Lord’s Liberation Army and other rebel groups fighting in the area (WHO, 2009).

I discussed with them the most popular theories on the possible cause of Nodding Disease and the specific actions taken by World Health Organizations and the Ugandan Government to stop the suffering. Below is a summary of the information they shared with me in my travels.

United States Center for Disease Control, Atlanta Georgia: No one I talked with in Gulu Center or in the villages in the northern districts believe that The Center for Disease Control (CDC) works to help them anymore. They believe that the Center works for the government and does only what the government tells it to do. Researchers from the Center have been present in Gulu for three years now and they have yet to release any official report on Nodding Disease to Parliament or to the Acholi People. No one that I talked with had confidence in them anymore or would share information with them. Some of the villagers felt that the CDC was deliberately stalling in order to protect the government. No one in the government or in the CDC has even organized an identification census that would provide important data on just how many children and adults have been infected with Nodding Disease. While I was in Gulu, the Uganda Monitor reported  that the Verification Team on Nodding Disease sent by the Ugandan Government was stranded in Gulu after it discovered that there had been no money allotted by the Government for their upkeep and travel costs.

River Blindness: Not one of them believed that there is a connection between River Blindness and Nodding Disease although the Center for Disease Control found that many of the children who had Nodding Disease had the same parasite that causes River Blindness in their blood stream but not all. It has not been proven that there is a direct correlation between the presence of River Blindness and Nodding Disease. According to the men I talked with River Blindness has been around since before the colonials arrived and no children or adults for that matter contracted anything close to the symptoms they have observed in Nodding Disease. The government is planning to spend millions of Ugandan shillings to spray wetland areas and rivers in order to rid these districts of the Black Fly that carries the parasites which cause River Blindness but everyone I talked with mentioned people who had become sick with River Blindness and not been infected with Nodding Disease. Most think that the government is trying to avoid finding the real cause of this disease.

Prions, A Kuru-Kuru-like Disease: Now their reaction to this was very interesting. Once I explained to them what “prions” were and how the mothers’ in New Guinea passed it on to their children from eating the human brains of dead relatives several people in the room got very excited – seems that it is common knowledge in the villages that soldiers in the UPDF with the blessing of their officers made Acholi adults eat the human brains of dead Acholi they had captured and killed in the district. One man’s brother said that incidents such as these were told to President Museveni and were translated by the brother of a friend of theirs only no one could remember his name.

As far as they could determine this occurred sometime between 2003-2007 when President Museveni made a personal visit to Gulu. They remembered that stories such as this had been reported in the Gulu newspaper, New Vision and they said that they remembered a film that was shown on television which exposed what the soldiers had been doing. One man said he remembered pictures of caldrons where people’s arms and legs were “sticking out of the pot”. When I asked them how prevalent this practice was by the UPDF and how many people they thought might have been made to eat dead people’s brains. One man told me that he remembered how the soldiers had cooked the dead people’s brains first then the Acholi were made to eat them. I began with the number ten and they all agreed “no” but eventually settled on “hundreds”.  Another man said that it was a common practice used by the UPDF and that the soldiers did not stop even after the President ordered them to desist. Most all of the people felt that they fared worse under the government than when dealing with the Lords Liberation Army. They also were wary of the “Invisible Children” Initiative who they claimed are very closely aligned to members of the Ugandan Army.  They went on to explain that they were treated far worse by soldiers in the Ugandan Army than by the rebels in the bush. Several men told me stories about how their homesteads had been burned down by the UPDF forces so that they would be forced to move into the camps. They also remember soldiers laughing when people fell down on the road and purposefully running over their belongings when refugees dropped them in the road on the way to the interment camps.

Chemical Waste, Toxins, or Poisons

This was another cause that the villagers did not dismiss. The idea that these children were being poisoned in some way by something harmful in the soil or in the water they felt was a definite possibility. When I mentioned the presence of chemical waste every person that I discussed this with in Gulu remembered that there had been a rumor going around during and after the civil war that the UPDF brought chemical warfare with them in order to fight the rebels. No one could tell me when, where, or why but every one of them nodded along when I asked them if it was a possibility. One person stated that Moammar Kadafi may have sent chemical weapons down to Uganda to help Museveni out during the civil war in the north.  Another man mentioned that it was common knowledge around the northern districts but no one could tell me what was shipped in or when it had happened. Even professionals in Kampala remembered being told that the UPDF had used chemical warfare during the civil war. No one I discussed this cause with denied the possibility or was at all shocked.

Another surprising twist was that many believed the children could have been poisoned by the food that they had been given to eat daily in the Internal Displacement Camps. Had they been given tainted food and if so, why didn’t everyone get sick. The villagers certainly made a case for the presence of poisons: when they reminded me that when heavy metals and chemical poisons are present in food supplies it is the young, the old, and the sick who are affected first. Maybe the children with Nodding Disease were the ones who were most susceptible to whatever was in the food, bedding, or water? And the next logical question is- If this happened this way, was it done deliberately? The villagers’ opinions were split on this one. Half felt that the government wanted to punish the Acholi for backing the previous president of Uganda and half felt that it had not been done on purpose but that the government was doing everything in its power to make sure that no one found out- even if it meant letting these children die.

Whatever the cause of Nodding Disease, the government has refused to provide the resources it should have offered. Nodding Disease has been infecting young children for a few years now but as of this year 34 adults have been diagnosed with the disease. The disease continues to spread throughout northern Uganda but the government has proposed to cut the health budget for next year at a time when it should have already declared the districts in the north a “national disaster area” and created an all-encompassing plan of action with which to identify and stop this devastating disease. Where are the medical centers, community resources, and the special schools needed by these children? When will a unified and committed approach to the pandemic begin?

In my next blog I will tell you about one woman of courage who has challenged the government to fulfill its responsibilities to its citizens in the north: Minister of Parliament, Beatrice Anwar.

Kat Nickerson                  Kampala,   Uganda   July 2, 2012



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