Are we not Ugandans?

It was near midnight one day earlier this week when my colleagues and I returned from a long field trip. It was a searing experience. We had traveled about nearly 500 kilometers from Kampala, Uganda’s capital, to one of the forgotten villages in the north. This village is called Tumangu. A village in Northern Uganda ...

MARC HOFER/AFP/Getty Images
MARC HOFER/AFP/Getty Images
MARC HOFER/AFP/Getty Images

It was near midnight one day earlier this week when my colleagues and I returned from a long field trip. It was a searing experience. We had traveled about nearly 500 kilometers from Kampala, Uganda's capital, to one of the forgotten villages in the north. This village is called Tumangu.

A village in Northern Uganda is typically a place where people are extremely poor, illiterate, and have no access to social services. It's not that they don't want services; there are simply very few that are available. There's little access to health care or education. Tumangu is worlds away from Kampala, which for all its problems boasts many of the conveniences of modern life. In Kampala you can easily use a cell phone, or walk into a bar for a cold beer, or even catch a ride on a boda boda. And if you're sick, you can easily get treatment at a hospital or clinic (assuming you can pay for it, of course). But people can only imagine such things in a place like Tumangu.

And no one knows when the situation will change. For all its sadness, the trip inspired me to do something about the plight of the people of Tumangu, many of whom are suffering from an incurable ailment called "nodding disease."

It was near midnight one day earlier this week when my colleagues and I returned from a long field trip. It was a searing experience. We had traveled about nearly 500 kilometers from Kampala, Uganda’s capital, to one of the forgotten villages in the north. This village is called Tumangu.

A village in Northern Uganda is typically a place where people are extremely poor, illiterate, and have no access to social services. It’s not that they don’t want services; there are simply very few that are available. There’s little access to health care or education. Tumangu is worlds away from Kampala, which for all its problems boasts many of the conveniences of modern life. In Kampala you can easily use a cell phone, or walk into a bar for a cold beer, or even catch a ride on a boda boda. And if you’re sick, you can easily get treatment at a hospital or clinic (assuming you can pay for it, of course). But people can only imagine such things in a place like Tumangu.

And no one knows when the situation will change. For all its sadness, the trip inspired me to do something about the plight of the people of Tumangu, many of whom are suffering from an incurable ailment called "nodding disease."

It’s an appalling situation. Some politicians have described it as "the silent genocide." You may have heard about some of the other problems of this part of Uganda, many of which stem from the conflict with the Lord’s Resistance Army (LRA). In October 2011, for example, President Obama sent U.S. Special Forces to hunt down LRA rebels, who are notorious for the atrocities they’ve committed in the region in the past. Lately, though, they’ve been causing most of their chaos in Southern Sudan, and their absence from Northern Uganda has resulted in relative peace. This is not to rule them out as a future threat, of course.

People in Kampala are exhausted by corruption, inflation, and rising prices for food and fuel. Northern Ugandans are worried above all about their health. Disease is undermining their ability to cultivate food and provide sustenance for their families. In Tumangu, 9 children have already died from nodding disease, and another 97 have been admitted, in critical condition, to the local clinic – which, of course, has little in the way to resources. (There are no precise figures for the population of the town. In the election last year there were 456 registered voters in the town – which, of course, leaves out those under 18 and those who didn’t register to vote in the first place.)

Shockingly, no one, not even health officials, really knows what causes this sickness or how it is transmitted. Nodding disease is a mysterious illness that stunts brain growth among the small children who are its victims, sometimes causing mental retardation. (It takes its name from the convulsive nodding motion that marks those infected with it.) Sometimes its victims break out in violent tantrums, as if possessed by demons; some act as though they’re being pursued by people armed with machetes or guns. In some cases victims report being weighed down or suffocated by "something heavy" that they cannot see. Those who contract the disease usually die from it within a few years. It is a horrible thing to watch. The Ugandan media are filled with stories about it: see Monitor.co.ug, Irinnews, and Dailymail.

With all the information now available about this deadly disease, it is all the more astonishing that nobody has been able to figure out what causes it or how to develop a vaccine. Even AIDS, ebola, and cholera — all diseases that have caused terrible epidemics in Northern Uganda — are capable of treatment today. Why not nodding disease? It is spreading rapidly in Northern Uganda, and as the threat increases, so, too, does the urgency of the need for a response.

One side effect of the disease is that it is deepening the local people’s sense of estrangement from the authorities. Many people say that the government does not care about them, and that it only pays attention during election season. (The photo above shows a woman voting last year in the northern village of Wiiaworanja.)

As one male resident of Tumangu put it to me: "Past election, nobody bothers about us, are we not Ugandans? If the President can spend millions of shillings buying fighter jets, yet there is no war to fight, why can’t they attend to this killer disease?" Many people in this village say that they have lost all hope in a government that has failed to attend to their plight. Surely, by now, it is time to start paying attention.

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