At a compound in La Orogali, a village in Pader district, northern Uganda, a dejected, frail 10-year-old girl sits helplessly. She has been diagnosed with nodding disease, a mysterious ailment characterized by seizures, nodding of the head, mental retardation and stunting, which affects thousands of children in the region, leading the government to draw up a wide-ranging response plan.
Every day, the girl’s mother, Marolena Acan, tends to her daughter’s burns. “That day, it was evening and we were seated around the fire, eating, when all of a sudden the child started nodding and fell on the fire and got burnt.”
The mother says she has all but lost hope that her daughter will recover. “This child is no more. We are waiting for the day she will [die],” she says.
“Several parents in the villages have given up on their children, they are abandoning the sick ones, citing difficulties taking care of them,” said Alice Kipwola of the Trans-cultural Psychosocial Organisation (TPO), an NGO.
School enrolment has also been affected.
“Last year alone, 57 children dropped out of [this] school because they could not cope with the disease and they feared the mocking they were receiving from their fellow children. It is sad because the disease is affecting learning,” explained Nyeko Richard Watmon, head of Aruu primary school.
In Uganda, the disease is most prevalent in the districts of Kitgum, Pader and Lamwo. Some 3,097 children have been affected, of whom at least 170 have died – in many cases because the condition makes it impossible to eat - according to the World Health Organization (WHO). The syndrome has also been reported across the border in South Sudan.
The cause and exact nature of the syndrome remain unknown, despite investigations by local and international actors. Investigations have ruled out toxic, infectious or nutritional factors.
There are clear associations with Onchocerciasis, or river blindness: 93 percent of those with nodding syndrome live in areas where this disease is prevalent, and in both ailments a modest deficiency of vitamin B6 and of other micronutrients, such as zinc, vitamin A and selenium are common, according to the WHO.
Anti-epileptic drugs have been effective in treating nodding disease patients.
Faced with a rising caseload, the Ugandan government has designed a response plan to address nodding disease in the Acholi sub-region.
The US$2.9 million plan calls for sensitization programmes aimed at making parents take their children to health centres for check-ups; setting up mobile clinics, as well as centres for screening, treatment and nutritional support; the development of treatment guidelines; twice-yearly mass treatment of river blindness; increased surveillance; and an in-depth epidemiological study to help understand the disease.
The government has already opened a training centre in the town of Kitgum for health workers to be deployed in the town’s hospital and other facilities in the region.
But the plan is severely underfunded, and in late February, parliament passed a motion compelling the government to provide the necessary financial resources.