I wager that last week, your twitter feed was dominated by tweets tagged #StopKony or #Kony2012. If you don’t use twitter, perhaps Kony bombarded you via Facebook newsfeed or your Reader of choice. As intended by the creators, Invisible Children, Inc., the Kony 2012 campaign has gone completely viral.
The response to Invisible Children’s thirty-minute video on Joseph Kony and the Lord’s Resistance Army (LRA) has been overwhelming. Ranging from passionate praise to vitriolic denunciation, the variation in and magnitude of the viewers’ response underlines the complexity of the issues in and surrounding the video. I hope not to unintentionally contribute to harmful narratives, but I have noticed (with interest, as a public health professional) that many of the responses to Kony 2012 are concerned with the resources and attention being given to this film and diverted from other issues that seem to be more current and of higher priority to Ugandans. While many aspects of the discussion surrounding Kony 2012 merit very serious attention, there is one particular issue that sparked my interest, and perhaps the interest of fellow public health professionals. That issue is nodding syndrome.
In the unlikely event that you are not aware of the video or campaign, here is some background information: Invisible Children, Inc. is a non-profit organization, founded in 2005 by Jason Russell, Bobby Bailey and Laren Poole, with headquarters in San Diego, CA and the Gulu district of Northern Uganda. The work of Invisible Children concerns civil strife caused by the Lord’s Resistance Army. The artistic and enthusiastic founders traveled to Uganda in 2003, where they first learned about Joseph Kony and the LRA. In Uganda, the organization has developed a merit-based scholarship program for students affected by the conflict; it has created a program that not only renovates and constructs school buildings, but focuses on improving student-teacher relationships as well; and it contributes to building financial independence for women who had been abducted by the LRA. These programs, among others run in the Democratic Republic of Congo and the Central African Republic (areas that are currently threatened by the LRA), have gained enormous amounts of recognition in the form of press and awards and they demonstrate the admirable goals and aspirations of the organization.
The organization has produced eleven videos since it’s creation, the latest of which is Kony 2012. According to the Invisible Children site, Kony 2012 is “a film and campaign by Invisible Children that aims to make Joseph Kony famous, not to celebrate him, but to raise support for his arrest and set a precedent for international justice.” I will admit here, that I recognize that the producers had no intention to discuss the current health concerns in Uganda.
The film was absolutely successful in raising awareness and making Kony famous. As of March 9, the Invisible Children video was viewed 39 million times on its official YouTube channel and another 13.5 million times on Vimeo (Huffington Post reported the video had 70 million views total as of March 11). Between these two video channels, the campaign generated 355,991 comments. This doesn’t include the plethora of Facebook shares and tweets relating to Kony 2012. As stated, not all of the feedback has been positive. In fact, much of it has been caustic criticism. The campaign has been accused, and I will venture to say, perhaps rightly so, of contributing to a narrative that portrays Africa as helpless and in need of relief and rescue; which is to be provided by none other than the white American savior. It has been accused of factual inaccuracies. It has been accused of wasting time and resources on an issue that Ugandans themselves do not prioritize. Some of these criticisms cite the mysterious nodding syndrome as a much higher priority.
At the same time that Americans were tweeting about, “liking,” and sharing Kony 2012, 50 Ugandan women tied themselves to trees outside of the NGO Forum offices in Kampala to show solidarity with mothers who have children suffering from nodding syndrome.
As previously reported in The Disease Daily, nodding syndrome was first documented in Tanzania in the 1960s by Norwegian physician Louise Jilek-Aall. For decades, the disease remained isolated, but within the past few years it has spread to South Sudan and Northern Uganda (here is a visual representation of the spread in South Sudan by Nature).
The U.S. Centers for Disease Control and Prevention (CDC) began studying the disease in 2009, however, nodding syndrome still remains a mystery, as stated by the CDC’s Scott Dowell in a conversation with writer John Donnelly, featured in The Lancet: “We are in the business of detecting outbreaks. For the most part, when we investigate an outbreak, the cause becomes clear, but periodically we get these ones where the cause isn’t clear.” Nodding syndrome is one of the six cases whose cause remains unclear to the CDC.
We do know that the syndrome has, thus far, manifested as a neurologic condition, affecting children exclusively (usually between ages 5 and 15), and characterized by seizure-like behavior, such as head nodding, convulsions, and staring spells. The episodes that characterize nodding syndrome have severely negative impacts on the brain, causing reduced neurological function and development, as well as physical stunting. Scientists are unsure about the cause of these episodes, but believe that eating and cold temperatures may induce them. In addition to the physical and neurological deterioration, affected children are also more prone to accidents, such as drowning or burning.
As David Lindsay of Global Health Frontline News reports in the Huffington Post, frightened parents sometimes tie their children to trees to prevent them from harming themselves or others during their episodes. One particular parent ties his 12-year-old daughter to a tree every morning before he goes to work. Though it devastates him, he does so to protect her. She is already covered in wounds and burn scars from falling into fires while experiencing an episode.
Researchers report a potential lead: the connection between onchocerciasis and nodding syndrome. Onchocerciasis, or river blindness, is caused by the Onchocerca volvulus worm. A systematic review of community data from 2008 showed that in certain west, central, and east African nations, the prevalence of epilepsy increased with the prevalence of onchocerciacis. In a Morbidity and Mortality Weekly Report from January of this year, CDC researchers present data from a study in South Sudan. In one village, they found that 22 of the 25 children with nodding syndrome also had onchocerciacis. While the second village failed to provide the same promising results, epidemiologists still believe this is a direction to pursue, as the findings are consistent with what other researchers have shown from different regions in Africa.
Other suspected connections, as reported in the Ugandan publication, The Monitor, include prion diseases from bush meat and detrimentally low levels of vitamin B6 in the blood stream.
There is currently no method of prevention or treatment for nodding syndrome. According to Nature, the CDC is continuing work with anti seizure drugs to determine if they are acceptable interventions.
The CDC has confirmed 194 cases of nodding syndrome, but there are case counts from credible organizations that reach as high as 3,000.
Stephen Oola, a local correspondent for Insight on Conflict, a publication of Peace Direct, acknowledges the positive work that Invisible Children has done, but says that no one in Uganda is talking about the LRA or Kony. Instead, people are concerned about nodding disease and the little that the government is doing to understand it. He states: “Kony remains a problem and so are the over 2000 children dead and over 300 busy dying in northern Uganda today nodding with an unknown “nodding disease” without any government actions.” Members of Ugandan Parliament are calling the lack of attention to nodding syndrome a “sign of failed service delivery.” As Lindsay states, because authorities do not know how to treat or prevent nodding syndrome, more research is needed. Research requires organization and financial support.
The Guardian’s Data Blog features an infographic by user Charlie Morton that displays the money that went into producing and distributing a movie and how that money could have been used to treat malaria. Arguably, the money could also have been used to address the mystery of nodding syndrome.
It is true that Invisible Children is not a health organization, nor does it proclaim to be. However, it is clear from the response to Kony 2012 that there is a strong sentiment about how Uganda is being discussed, and what is being portrayed on a very large scale, as a top priority for Americans and Ugandans.
Because this is a topic that has generated such passionate responses, I do want to make clear that 1) I do not support Joseph Kony or the LRA; 2) I applaud efforts to oppose the LRA and bring Kony to trial; 3) I recognize that, despite what are sometimes the best intentions, harmful narratives that remove the agency and voice of Africans have been created, and last; 4) I hope that open, honest, and respectful dialogue will help to deconstruct and remove these narratives.