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Care for children with nodding syndrome in Uganda falls short

Adequate care for children in Uganda with nodding syndrome is still lacking as government-run centres run low on supplies.

Last year, the Ugandan government set up four rehabilitation centres to provide care for children with the illness known as nodding syndrome. The condition causes seizures and stunted growth, and a repetitive dropping of the head (hence the name). There is currently no known cure, but anti-epileptic medication can relieve symptoms.

In the central and northern districts of Uganda, nearly 4,000 cases of nodding syndrome have been reported since the illness was first documented half a century ago in parts of Tanzania. Scientists from the US are carrying out research into the disease and have travelled to Uganda to study affected children. And last year, four rehabilitation centres were established to provide sufferers with nutritional supplements, such as folic acid and vitamin B complex, as well as the anti-epileptic drugs.

However, a recent IRIN article highlights how a lack of funding is affecting the care which the centres are meant to provide. Speaking to the news agency, one of the centre managers admitted “we are out of food to provide to children”. Drug supplies at the centres are also erratic. One mother of a 12 year-old boy with nodding syndrome said she had withdrawn him from the centre in the Lira district because there was insufficient food and a patchy drug supply at the facility. She explained that even though she would struggle to provide for her son, “it was pointless [for him] to stay there”.

Children undergoing treatment also face stigma when they return to their local communities. One 15 year-old told the news agency that his school friends accused him of being “demon-possessed” and didn’t want to socialise with him anymore. “Even at home, I feel lonely because our neighbours don’t want their children to play with me,” he said.

Health workers in Uganda say there is a real need to provide follow-up psychosocial support to children who have left the centres. The government has spoken of plans to train special-needs teachers for the districts affected, but again funding issues have delayed efforts to implement this training. In the meanwhile, the search for what causes nodding syndrome goes on in the US, but that brings little comfort to those youngsters already struggling to cope with the devastating effects of the disease.

Laurinda Luffman signature