Acholi Sub-region desperate as children nod to their death

It might seem like an amusement ailment, but the victims can violently nod to death. Nodding is the notable symptom of the mysterious, little-known nodding disease that is threatening to wipe out the children in Acholi sub-region. It has so far killed about 1,800 children and more than 1,000 children are suffering from it.

The condition, named after its major symptom has left many parents speechless and desperate with the government lost for what action to take to curb the situation since its cause and mode of spread is unknown. When the first cases of the disease were reported in 2003, some locals thought it was witchcraft. They visited witch doctors but nothing changed.

Others thought it was a curse from God, so they chose prayers but still, nothing changed. Others believed in scientific medicine but lost hope along the way, saying the white man’s drug had failed them. No single child has been cured since 2003. At least 1,270 cases of children between two and 15 years old have since then been registered in Kitgum, Lamwo, and Pader districts and two cases registered in Gulu District last week.

The disease, which has remained a puzzle to many medical experts, is characterised by mental and physical retardation, head nodding and drooling, constant nasal flow and saliva. The victims often nod themselves to death. Many of the affected children are malnourished because eating food seems to spark bouts of nodding and seizures. Epilepsy drugs have been used to control the attacks but they do not cure the disease.

The Centers for Disease Control (CDC), the American organisation that was tasked to study samples from some of the nodding syndrome victims, disclosed that results of the 2009 samples were given to the Ministry of Health in August 2010.

However researchers were not able to find the cause of the ailment that has spread across the six districts in Acholi Sub-region. According to the CDC Lab Director, Mr Robert Dowing, the results which were given to the Ministry of Health offered no clear guidance on what was causing the disease but two symptoms stood out; river blindness and nutritional problems. This enhanced the theory that the disease is connected to a parasitic worm, Onchocerca volvulus, which is carried by a black fly and also causes river blindness.

Dr Dowing, however, said results of the second samples taken to Atlanta are expected in two weeks’ time. Dr Jane Achieng, the director general of health services, said the Health Ministry delayed to release the results to the public because they were inconclusive and did not show the cause of the disease. “We could not report the results yet because they were partial and that’s why we sent more samples to Atlanta,” she said during a meeting with Acholi Parliamentary Group in Kitgum District recently.

Results from the MRI scans done at Mulago Hospital on some of the affected children have shown abnormal brain waves but it does not get to the root of the problem.

The syndrome is common in areas around Pager River Belt in Kitgum, where the LRA and government soldiers rocked their guns and missiles, leaving some locals to say the disease could be yet another effect of the war.
Several other theories have been advanced as to what could be the possible cause of the disease, among which is relief food and post war effects, contaminated water, and poisoned game meat.

To try and confirm these theories, Gulu University, based in the region, is set to institute an in-depth research into the mode of spread, control and treatment of the nodding disease that continues to ravage the sub-region unabated.

According to Prof. Emilio Ovuga, the dean of the Faculty of Medicine at the university, the area of focus during the research will be the effects of heavy artillery used during the LRA insurgency and the increased tsetse fly infestation in the affected districts.

Although the intended research is a positive move, it could take months before a proper diagnosis of the ailment is got. The research centre is expected to open between March and May. Against this background, the Acholi and councillors have demanded that government puts in place rehabilitation centres to manage the symptoms as experts try to find answers to the battling question.

They have also proposed responses such as; household assessment to determine the actual number of people and families affected; a comprehensive research centre in the sub-region; psycho-social support; constant medical supplies; infrastructure like a hospital and special needs school and mobile units to offer easy accessibility.

Most children suffering from nodding disease cannot walk long distances, and the nearest health facility is about 12 kilometres away from the villages. Other people opt to haul their children on wheelbarrows to the health centres, which they say is very tiring and discouraging.

“Even after you have gone through this labour and walked a very long distance hoping to get some medicine, you reach the hospital and find when they have no medicine,” said Ms Jackline Lakot, a mother of two affected children. Though it is estimated that about 1,800 children have died of the ailment, the only official figures are from Pader (88) and Kitgum (45).

Recently five children from Okidi Village drowned in a stream when the disease attacked them. The disease has left many homes broken with some men abandoning their wives, accusing them of witchcraft. Others have driven their wives and children out of their homes.

Ms Betty Olana has eleven children, five of whom have the nodding syndrome. One contracted it in 2003, and the other four were infected the following year. “My husband ran away from home, now I have 11 children to look after. When the five are under attack, I need someone to hold them. I can’t do any work because I have to keep on the lookout on who will get seizures next,” she laments.

Efforts to alleviate poverty by residents who have just returned home after years in camps, have also failed because parents of the infected children find it difficult to work.

Most of the time is spent making long trips to health centres and looking out for the children so that they do not fall into fire or water. “Life has become unbearable for me. I can’t eat when my children are looking on because every time they see food, they start nodding or get seizures,” says Ms Janet Akol. She adds: “I have to use ropes to tie them on a tree so that I run a few errands like fetching water or getting their medicine from the hospital.”

More than 1,000 children in the Acholi Sub-region are reported to have dropped out of school as a result of the disease which affects levels of concentration.

Jennifer Arach and Patrick Kidega both said they dropped out of school at Primary Five in 2006. According to Mr Michael Otto, a psycho-social officer with Transcultural Psycho Social Organisation Uganda, an NGO, the epilepsy drug that is being used to manage the nodding symptoms has stopped working for some of the victims.

“Some react to the drug,” Mr Otto says. “There are those who get wounds in their mouth, and some peel off their skin, complicating the problem further.”

At Okidi Primary School, about 300 sick pupils have dropped out of school since 2008 because of the stigma. Most of the pupils in the school do not want to associate with the “sick.” And because of the stigma and failure to concentrate in class, most of them have opted out. The problem escalates at lunch break when food is served. Many with the syndrome, get seizures, which takes them between one to three hours to regain consciousness.

Parents are thus appealing to government to set up a school for special needs where the victims can be catered to. A report by Trans-Cultural Psychosocial Organisation, an NGO, indicates that at least 1,800 new cases of the disease are reported after every three months.

State Minister for Health (general duties) Richard Nduhura last week appealed to the families affected to stay calm as government tries to find a cure, and the cause.

“We cannot effectively manage the disease because we don’t know what causes it but we can manage symptoms as we try to find the cause. This is not the time for apportioning blame. Working together will save the future of Acholi sub-region,” the minister said. But despite government’s promise to put in place immediate interventions to manage the disease, the long-suffering victims of the ailment are losing hope and lives.

By the end of December last year, government announced plans to set up centres where the affected children would be getting help in form of pain killers to manage the symptoms, dispatch a team of experts to the affected areas, and an information centre.

However, to date, nothing has been done. Health facilities ran short of the epilepsy drugs they have been using to control the disease, leaving the sick in despair.

Even with threats from Acholi MPs to ferry the sick to Kampala in protest, nothing tangible has been done by government. With Parliament on recess until early February, victims of the disease will have to wait longer for any help from government as the matter is not being given the urgency it deserves.