Abim — No-one - neither the Centres for Disease Control and Prevention (CDC) nor Ugandan epidemiologists - has yet figured out exactly what the disease is that is plaguing children across four districts in the north of Uganda.
Such uncertainty around what is being referred to as 'nodding disease' is highly debilitating for a region just beginning to emerge from decades of violence perpetrated by Joseph Kony's rebel militant group the Lord's Resistance Army (LRA).
Searching for answers
Since 2009, nodding disease has killed at least 200 children and affected more than 3,000 according to the Ministry of Health. But ask anyone in the affected districts - Pader, Kitgum, Lamwo and Gulu - and they will tell you it has been around for far longer.
The best that experts can do for now is provide a list of characteristics to describe nodding disease: patients, almost always children, begin to nod when exposed to cold or begin to eat, which often leaves them unable to consume food; it stunts growth and can cause severe mental regression; and it is associated with a fixed gaze and drooling, tongue-biting, and incontinence. It can also end up killing those affected, either because patients fall into fire or water during a fit, or because the seizures become so violent they overwhelm the brain. When parents have to leave their children alone, they are often forced to tie sufferers to trees so they do not harm themselves if they start seizing.
While health workers can treat the symptoms to some extent, they cannot yet prevent or cure the disease. The current prevailing assumption is that nodding disease is linked to river blindness (Onchocerciasis), a disease transmitted by black flies that are endemic across parts of sub-Saharan Africa. A similar disease is also being observed in South Sudan and is being investigated by the World Health Organisation (WHO) and CDC.
Seeking help
Some parents noticed the emergence of the disease as far back as 2004. Eunice Opio's child, Winny Ojok, for example, first started showing symptoms around that time, when her family was still living in a camp for internally displaced people in Gulu, waiting for the government to drive out the LRA. Winny died from a severe seizure in 2009, around the same time her younger sister, Sharon Adair, contracted the disease.
Sharon, who is now four, is still the size of a toddler. Because the nodding comes on when she sees food, she often goes days without eating. She is therefore often severely malnourished.
Four months ago, while activists in Kampala were chaining themselves to trees to pressure the government into action, Opio took Sharon for treatment. Sharon was put on anti-convulsants to control the sporadic nodding and is also now receiving nutritional supplements. Opio told Think Africa Press that there has been "some improvement" but that this is not enough.
"I feel the government should come out and try to solve the problem or find a cause," she said. "The parents are really suffering. The [patients] really hurt themselves". Such feelings have also been expressed by Ugandan opposition politicians such as Beatrice Atim who accused the government of neglecting nodding disease, those affected by it and their families.
In the absence of broad recognition and concerted government action, frustration has been rising. In this vacuum of answers, local theories about the reason for nodding are also abounding - these range from blaming poisoned food in refugee camps or the spirits of LRA victims, to certain types of meat and sources of water, to a new strain of malaria.
Opio said she never sought medical treatment for her eldest daughter Winny because she was not sure if the symptoms resulted from disease or were a psychosocial response to the trauma of the war. "I'm not a medical doctor so I cannot tell," she said, and the camp lacked sufficient medical care.
District leaders and health officers say the disease would have been noticed sooner, but during the war there was no way to regularly access areas of the north. And in the immediate post-war era, they were still rebuilding the devastated health system. It was not until recently that they were able to begin connecting the dots and ask questions about the rise in epilepsy cases, which is how most patients were classified.
Government response: too little, too late?
The disease has effectively paralysed the communities it affects. Parents are unable to work because nodding patients require constant attention. Families affected by the disease are ostracised from their communities since no-one knows whether the disease is infectious.
"These communities are so demoralised," Patrick Okot, the local chairman of Abim, told Think Africa Press. People live with the fear that every decision they make - the food they eat, where they get their water - introduces the potential for infection. This small town in Lamwo District has been badly affected by nodding disease, with an estimated 300 cases in the village and surrounding areas. The nearest health centre is nearly 50 km away. "This disease, which is not yet known, is giving us a lot of setbacks", says Okot.
Okot believes that government health officials have not done enough to allay these fears.
In his State of the Nation address earlier this month, Uganda's President Yoweri Museveni discussed a newly launched government health effort. In an apparently unscripted moment during his speech, Museveni touted the plan as the best option the government has for preventing the further spread of nodding disease: "Why don't we then eliminate river blindness so that if nodding disease continues, we will know it is something else?" he asked.
Sign up for free AllAfrica Newsletters
Get the latest in African news delivered straight to your inbox
Since the government's river blindness eradication campaign started, however, there has been increasing discussion in his village about whether black flies may be the cause of nodding disease, but no-one is fully convinced one way or the other.
With support from the CDC, the government is also now completing a survey of the affected areas to better understand the extent of the infection. They have also rallied around a specific message they are delivering to the communities: 'We do not yet know exactly what causes this, but we do know how to treat the symptoms - so everyone who is affected should seek treatment'.
Parents like Opio are thankful for the attention and medicine, but it is not a long-term solution. Sharon's attacks still come occasionally so Opio cannot leave her alone. If she is unable to get her daughter's medicine from the clinic, Sharon regresses quickly.
"The government took too long to come," she said. "It allowed the disease to spread and it is now maybe too much."
What she really wants is a cure for her daughter and to know what she should do to make sure Sharon's younger brother - her only unaffected child - does not also contract the disease.
Andrew Green is a freelance journalist based in Kampala, Uganda, primarily covering global health and governance. You can follow him on Twitter @_andrew_green.
