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Despair as kids nod in pain

By Mubatsi Asinja Habati

Nodding disease opens up old wounds for people emerging from 20 years of war

Christine Auma, a single mother of four children, appears to be in deep thought as she sits, hand on chin, next to a hospital bed. Her eyes are fixed on her 15-year-old daughter, Vicky Apa, who is admitted in Kitgum Hospital. Severely emaciated, Apa has suffered several convulsions attributed to a strange disease simply known as ‘nodding syndrome’ for lack of a proper scientific name.  Apa has lain in that hospital bed for 2 months with no recognizable improvement.

“This morning she had a violent convulsion that nearly killed her,” Auma says, tears forming in her eyes.

“Since she started getting these attacks her personality has changed. She does not talk and seems not to understand what I say.”

She says it takes Apa at least four hours to recover from a seizure. Next to Apa’s sick bed lies 16 year-old Scovia Lakot, who looks like a five-year old due to emaciation. Lakot’s father, who attends to her, says she has suffered from the disease for eight years and behaves just like Apa.

Apa and Lakot are two of over 3,000 children in Northern Uganda who have been struck by the mysterious illness that has left doctors and scientists puzzled. Nodding disease gets its name from the strange nodding-like symptoms children display in the first stages of a seizure. But doctors in Northern Uganda and at the U.S -based Centers for Disease Control and Prevention (CDC) say that is not its worst effect.

Severe, epilepsy-like seizures grip the children, they struggle to eat, become mere shells of their selves and drop out of school. Joseph Santo, the headmaster of Aromo Wangalubo Primary School, says so far 50 pupils from his school have been affected, and nine have died. Parents are spending more time looking after the sick kids and less attending gardens, leaving families with less food and reduced incomes. Livelihoods across the region are threatened, according to civic leaders and civil society workers.

Dr Joseph Wamala, a senior epidemiologist in the Ministry of Health, says while Nodding Syndrome so far has no known cause or cure, most children with the illness also show symptoms of river blindness and epilepsy, and a survey had placed them in river valleys.

Health workers like clinical officers and nurses at nodding disease ‘treatment’ centres like Atanga, Pubalek and Kitgum say they are giving the patients Sodium Valporate to prevent convulsions, Vitamin B Complex to strengthen muscles and Vitamin A to improve sight.

Despite these interventions parents like Alex Opoka, father of 15 year-old Scovia who is malnourished and stunted, say they don’t see any improvement in their children. Opoka says his daughter has been suffering from the nodding syndrome for eight years.

She was among the 20 children Kitgum MP Beatrice Anywar ferried to Mulago Hospital for treatment in April, in a bid to prompt a faster government response to help her people’s plight.

Lakot and Apa were also in this group, which was visited by President Museveni at the hospital, then returned to Northern Uganda after Mulago doctors thought they were fit to go back. But four of the children are still fighting for their lives at Kitgum Hospital.

The medical practitioners at the hospital say they are feeding the children on maize flour and beans – a far less nutritious diet than they need. When NGOs like ActionAid International Uganda, FIDA and Uganda Women’s Network distributed food and clothes recently, their parents and caretakers could afford a momentary smile.

For a region that is recovering from the devastating effects of a 20 year-old war between rebels of the Lord’s Resistance Army led by Joseph Kony and the government of Uganda, nodding disease has opened old wounds.

Parents who can no longer go to the gardens to grow crops for food and sale will soon be asking for alms once again. In some homes, when the sickness gets so severe, men are abandoning their families.

Slow government response

Locals and district officials in the region are unhappy with the Government’s slow response. Last month President Yoweri Museveni launched a massive immunization campaign in the region. But district leaders say they are running low on cash. Gulu Director of Health Services Paul Onek Paul Onek said government had promised Gulu District Shs 50 million, which leaders say is inadequate given that the district has so far spent Shs 38 million on the disease. Yet even the Shs 50 million has not reached the district. Lamwo and Kitgum the most affected districts, were promised close to Shs 300 million, of which Shs 100 million will go to Lamwo. But during a fact finding tour by Parliament’s Nodding Syndrome committee, MPs complained that health units used as treatment centres were poorly funded. At Atanga Health Centre III, the in-charge said the facility receives Shs 250,000 per month for stationery, general cleaning expenses, and emergency response.

Locals say the problem is acute, yet some government officials are trying to conceal it from the public eye. At Aromo-Wangalobu Primary School in Gulu district, Dr Wamala almost beat up a photographer who wanted to film a convulsing child.

Parents like Auma and Opoka say all they want is for their kids to get well and return to school.

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