Early this week, physical contact was banned in Uganda. The re-emergence of Ebola, with two cases discovered in Kampala, has sparked fear in the country. And little wonder. It's a disease that could have been created by writers of a Hollywood horror movie -- a communicable disease that often causes fever, bleeding and death.
But there is another disease stalking Uganda that doesn't fit the traditional images of outbreak and disease. And yet as I sit with Sandra Komuhiimbo of the Uganda Women's Network, I began to get a real sense of the horror as she describes a disease that seems to have come for the children. Komuhiimbo has seen the ravages of the disease up close through her work in northern Uganda. She provides me a litany of tragic stories.
There is the 16-year-old in Mulago Hospital, whose frame has become so shrunken that she fits inside a baby cot. There is 12-year-old Nancy Lamwaka, in Atanga sub-county, who has lost all control of her body and has to be tied to a tree after she fell into a fire and burned her hands. Thirteen-year-old Denis Awili has seizures after eating and is rendered unconscious.
These children are suffering from the mysterious "Nodding" disease. Nobody knows where it came from or what causes it. They don't even know what it is. They just know that "Nodding disease" has affected thousands of children across northern Uganda. And that it is centered in regions recovering from years of war: Gulu, Kitgum, Pader, Lira, and Lamwo.
The families of these children have been plunged into a nightmare. Margaret Ochiro is a mother who sought help from the witchdoctor for her two sick children. Janet Cida is another mother who must walk twelve kilometers to pick up drugs for a child who cannot be left alone. The drugs are used to limit the seizures that afflict the children. These epileptic-like symptoms induce a form of uncontrolled "nodding," an inability to speak or comprehend, and can leave the child immobile. The epileptic symptoms seem to be triggered by eating. The children stop eating and begin to waste away.
Nodding disease is progressive, leaving children physically and mentally stunted. It impedes the ability to speak or understand consequences. Children wander away, sometimes lost forever; others, in a bid to get warm, step into fire. This is what happened to young Nancy, whose desperate parents began tying her to a tree in a desperate effort to keep her safe.
Nancy's family is typical. The affected families come from regions that have been heavily traumatized by the wars of recent years. Her family lived in the refugee camps while the war raged on. When Nancy was six, she began suffering from epileptic seizures. Nancy's father took her to health officials, but the prescribed epilepsy medication didn't help. Although her family moved out of the camp, Nancy still suffers. As she is the oldest, her parents have no one to watch over her while they work; this means she has to be tied to a tree for up to 13 hours. There has been improvement recently; different medication has reduced the epileptic fits to twice a day from the usual ten. But she remains stunted, unable to fully communicate or help out around the house.
Some in the villages whisper that children like Nancy have been cursed by the violence of the region or been poisoned by the chemicals of war. Or perhaps the food in the camps was contaminated. Of course, there is no proof. They are the despairing explanations for an irrational and frightening affliction.
The dominant theory is that the children are suffering from a river blindness parasite. This is also problematic; river blindness affects an estimated 37 million people worldwide and causes blindness -- a symptom not associated with nodding disease. And why would the river blindness parasite only affect children? But after a couple years of intensive study, neither the government nor the Centre for Disease Control has a more convincing cause for the disease.
Central Africa has been the root source for many diseases -- Ebola being the most famous. Nodding disease hasn't received anywhere near the same level of attention from the international community but it hunts the poor and the very young in isolated regions. Few can afford the drugs or the high nutrient diet that eases the malnutrition. Thankfully, grassroots organizations like the Uganda Women's Network are trying to fill the gap. They are working to bring nutrient-dense food to the families. They are also pressuring the government to build proper medical centres for the children. Despite this, though, it is clear that more resources are needed.
It is like the families of northern Uganda have been abandoned twice: first, as their sons and daughters were lost to the brutality of Joseph Kony's Lord's Resistance Army and its ranks of child soldiers, and now as they face losing another generation of children to this mysterious disease.
Thanks to Sandra Komuhiimbo from Uganda Women's Network for the information and to Chris Okello for his assistance.
For pictures of the villages and children, please visit the Twine Ribbons for Nodding Disease.