Nancy Lamwaka, a 12-year-old in a Ugandan village, spends her day sitting out in the open, tied to a rope. Lying in the dust under the burning sun, she struggles with her health every day.

It's the same story with 14-year-old Patrick Anywar, who lies curled up, naked on the ground while his younger brother and sister play in front of the family home. Patrick desperately wants to join the fun, but he can't, and it's a struggle to even look up at them.

Nancy and Patrick are among more than 3000 children in northern Uganda, who are suffering from a devastating mystery disease known as the nodding syndrome. The disease, which mostly affects children under 15, has reportedly hit almost every family in the village of Tumangu in the country.



Nancy Lamwaka, 12, who is suffering from nodding syndrome, sits out in the open in Lapul, Pader district, 300 km (186 miles) north of Uganda's capital of Kampala, February 8, 2012. Nodding syndrome, which mostly affects children under 15, was first documented in Tanzania as early as 1962. However, despite extensive investigations, researchers are still largely confounded by it. Most of the fatalities attributed to the disease are the result of secondary causes. Children with nodding syndrome are prone to accidents such as drowning and burning. Picture taken February 8, 2012. REUTERS/Edward Echwalu



Nancy Lamwaka, 12, who suffers from nodding syndrome, sits out in the open while being tied to a rope in Lapul, Pader district, 300 km (186 miles) north of Uganda's capital of Kampala, February 8, 2012. REUTERS/Edward Echwalu

The nodding syndrome, which first appeared in Sudan in the 1980s, has largely confounded researchers, despite extensive investigations. Most of the fatalities attributed to the disease are the result of secondary causes. Children with the nodding syndrome are prone to accidents such as drowning and burning, according to Reuters.

Prior to the Sudan outbreak, the disease was first described in 1962, existing in secluded mountainous regions of Tanzania. However, the connection between that disease and the nodding syndrome was made only recently.

The cause of the illness, which locals say has killed hundreds of youngsters, has not been determined yet. What has been known so far is that the disease gradually kills its victims through debilitating seizures, stunted growth, wasted limbs, mental disabilities and sometimes starvation.



Children suffering from nodding syndrome gather in Akoya-Lamin Omony village in Gulu district, 384 km (238 miles) north of Uganda's capital of Kampala, February 19, 2012. Nodding syndrome, which mostly affects children under 15, was first documented in Tanzania as early as 1962. However, despite extensive investigations, researchers are still largely confounded by it. Most of the fatalities attributed to the disease are the result of secondary causes. Children with nodding syndrome are prone to accidents such as drowning and burning. Picture taken February 19, 2012. REUTERS/James Akena

Joe Otto, a volunteer health worker, explained to AFP how the disease has ravaged Tumangu, a village about 450 kilometers (280 miles) north of the Ugandan capital Kampala.

There are 780 people living in this village and we have 97 cases of the disease. It has affected almost every family, Otto told AFP.

Fifty-four-year-old Otto pedals his bicycle to the local health centre several kilometers away whenever sporadic deliveries of medicine arrive there. He collects the medicine and delivers them to the poor villagers, although he knows that it won't be more than a short-term solution.

We are giving out drugs for epilepsy, like carbamazepine, but this disease is different from epilepsy, Otto said.



Children suffering from nodding syndrome gather in Akoya-Lamin Omony village in Gulu district, 384 km (238 miles) north of Uganda's capital of Kampala, February 19, 2012. Nodding syndrome, which mostly affects children under 15, was first documented in Tanzania as early as 1962. However, despite extensive investigations, researchers are still largely confounded by it. Most of the fatalities attributed to the disease are the result of secondary causes. Children with nodding syndrome are prone to accidents such as drowning and burning. Picture taken February 19, 2012. REUTERS/James Akena

According to a report by AFP, researchers ranging from epidemiologists to environmental experts, neurologists, toxicologists and psychiatrists have been trying for years to find a cure. Investigations have been carried out find possible links between the disease and everything from a parasite that causes river blindness, to malnutrition and the after-effects of a civil war that has devastated northern Uganda for decades.

We looked at all this, but unfortunately we were not able to pinpoint any significant contributing or risk factors, said Miriam Nanyunja, disease control and prevention officer at the World Health Organisation in Kampala.

Although it is currently unknown what causes the disease, it is believed to be connected to infestations of the parasitic worm Onchocerca volvulus, which is prevalent in all outbreak areas. It is carried by the black fly and causes river blindness.



A child, who is suffering from nodding syndrome, looks on in Akoya-Lamin Omony village of Gulu district, 384 km (238 miles) north of Uganda's capital of Kampala, February 19, 2012. Nodding syndrome, which mostly affects children under 15, was first documented in Tanzania as early as 1962. However, despite extensive investigations, researchers are still largely confounded by it. Most of the fatalities attributed to the disease are the result of secondary causes. Children with nodding syndrome are prone to accidents such as drowning and burning. Picture taken February 19, 2012. REUTERS/James Akena

In 2004, most children suffering from nodding disease lived close to the Yei River, a breeding ground for river blindness, and 93 percent of nodding disease sufferers were found to harbor the parasite, far more than disease-sufferers without it, according to a report in The Yale Journal of Public Health.

However, the link is not yet a clear cut one.

We know that [Onchocerca volvulus] is involved in some way, but it is a little puzzling because [the worm] is fairly common in areas that do not have nodding disease, says Scott Dowell, lead investigator into nodding syndrome with the U.S. Centers for Disease Control and Prevention.



Watum Kenneth, 13, who is suffering from nodding syndrome, sits on the floor in Akoya-Lamin Omony village in Gulu district, 384 km (238 miles) north of Uganda's capital of Kampala, February 19, 2012. Nodding syndrome, which mostly affects children under 15, was first documented in Tanzania as early as 1962. However, despite extensive investigations, researchers are still largely confounded by it. Most of the fatalities attributed to the disease are the result of secondary causes. Children with nodding syndrome are prone to accidents such as drowning and burning. Picture taken February 19, 2012. REUTERS/James Akena



Nancy Lamwaka, 12, who suffers from nodding syndrome, shows her hand as she sits in the open in Lapul, Pader district, 300 km (186 miles) north of Uganda's capital of Kampala February 8, 2012. Nodding syndrome, which mostly affects children under 15, was first documented in Tanzania as early as 1962. However, despite extensive investigations, researchers are still largely confounded by it. Most of the fatalities attributed to the disease are the result of secondary causes. Children with nodding syndrome are prone to accidents such as drowning and burning. Picture taken February 8, 2012. REUTERS/Edward Echwalu

Since there is no known cure for nodding disease, Uganda's Ministry of Health reportedly began using anticonvulsants such as sodium valproate to treat its signs and symptoms lately.

While the search for the cause and a possible cure for the disease still goes on, poor and helpless villagers have been forced to move from fear to a grim acceptance.

As Otto said, the local residents are told that those who died were the ones who had been cured, because finally they were at rest from this painful disease.

We hope that our youngest can be saved.