While health experts try to identify the cause of East Africa's unexplained nodding disease, children continue to suffer.

Gulu - 'Don't be late for school', students are advised in black painted letters on the white roof of a classroom at Aromo-wang-Lobo Primary School in Gulu District, northern Uganda.

Sadly though, scores of pupils from the school, which stands in front of the hill where fugitive warlord Joseph Kony is said to have collected holy water to anoint child soldiers, are being robbed of their education because of nodding disease, a little-understood illness that has led to the deaths of hundreds of children and affected thousands in the region.

232 of the 532 students at the school are suffering from the disease. "They nod in the class, they nod any time", Santo Okello, head teacher, tells Think Africa Press. "Some people say they nod only when they see food, but that is not the case. These children nod any time when they're attacked by the disease."

The mysterious disease

The highly peculiar syndrome affects children between five and fifteen years old and is so named because it causes sufferers to nod involuntarily.

As described in a previous Think Africa Press article, "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." The causes of the disease are currently not known, although some believe it is linked to the same black flies that cause river blindness.

In a bid to address the disease, which is thought to have spread from South Sudan to northern Uganda around 2009, Uganda's health ministry has set up treatment centres in the region, launched a free phone number and website for people to report new cases and earlier this year, held the first international conference on nodding disease.

The event gathered together local professionals with nearly 200 international experts from other countries affected by the disease and from organisations such as the US' Centres for Disease Control and Prevention (CDC), the World Health Organisation and the UK's Department for International Development. The conference aimed to create a framework to guide the detection, confirmation, and management of nodding disease, and develop a standardised case definition for the disease.

Expected to begin later this year, Uganda's Ministry of Health has also set up a treatment trial, which will be largely funded by the CDC in collaboration with the ministry. CDC health communication specialist Justin Williams told Think Africa Press that the phases of the clinical study were currently being planned, but that the research would look into the food and water consumed by those affected by nodding disease as well as the broader environments in Uganda, South Sudan and Tanzania.

"There have been reports of head nodding as part of seizure disorders dating back to the 1960s in Tanzania, but nodding disease as a separate entity was described first in Sudan in the 1990s," Williams explains. According to South Sudan's health authorities there could be as many as 8,000 cases of nodding disease now in the fledging nation.

Trying to cope

It is hoped that the cause of the disease will be discovered as soon as possible and that effective treatments and methods of prevention will soon follow. In the meantime, however, thousands of children and communities are suffering.

Since April 2010, 14 students from Aromo-wang-Lobo Primary school have died as a result of nodding disease while 165 have been forced to drop out. Opiyo Awili is one of those. He quit primary school four years ago, unable to concentrate on his lessons.

"He has nothing to do," says Korina Awili of her 13-year-old son who is sitting passively and unable to control his movements outside the family home in Koy village. "When he wakes up, he sits like this and he even doesn't know if he's hungry and he doesn't beg for food. But as a parent you feel somebody must be hungry so you give them food. He talks unconsciously, something you don't understand. He's confused. I don't know what to do."

Opiyo's mother claims his symptoms first appeared when the family were in a camp for internally displaced peoples during the conflict in northern Uganda in which the rebel Lord's Resistance Army (LRA) caused havoc from the late-1980s to the mid-2000s.

"Before going to the camp there was nothing like this", she says.

Havens of Hope, a day-care centre opened two months ago by NGO Gulu Hope, provides some support for parents. The centre teaches and feeds affected children while a full-time nurse provides medication, cutting down the distance parents have to travel for drugs. Some parents, however, unable to bear the burden of caring for children with nodding disease, have reportedly abandoned them.

But head teacher Okello, who escaped the LRA twice after being kidnapped, vows he will never give up on the children. "Although I'm scared there's no other option," he says. "I'm now like their parent, I have to help them. Even if all the other teachers run away, I as the head teacher have to help them."