The first cases were documented as far back as 1962 in Tanzania. In Uganda, cases have been recorded since 2003. Medical investigations suggest the disease is a new type of epilepsy, though researchers aren’t clear what causes it. Symptoms include a repetitive dropping of the head, hence the name. This is often brought on by eating or if a child is cold and seizures can be severe. Victims suffer from stunted growth and deterioration of their brain function. With no known cure, the disease eventually proves fatal. According to the World Health Organization, 170 deaths have been recorded so far.
Nodding disease mainly strikes children aged 5 to 15 years. Cases have also been reported in South Sudan (which borders northern Uganda). A team of health experts in the region have called for greater surveillance and for children to be given anti-epileptic drugs. These have proved effective in lessening the effects of the disease, though investigation into the long-term efficacy of the drugs is needed.
News agencies have been interviewing Ugandan parents whose children have been infected to understand the devastation the disease causes to families. IRIN spoke to Marolena Acan, the mother of a 10 year-old girl with the illness. Marolena told the news agency how one of her daughter’s seizures caused the girl to start nodding and fall onto the fire as the family were eating. She tends to the burns daily, but Marolena has lost hope her daughter will get better. “This child is no more. We are waiting for the day she will [die]”, she says.
Reuters interviewed Michael Odongkara, whose daughter Nancy is another victim of nodding disease. Michael relates how he has to tie the 12 year-old to a tree, so she doesn’t wander off into the bush. The father says how much it hurts him to do this, but he has no other way of stopping her, after Nancy was once lost for three days. His daughter has up to five seizure episodes each day and her health has steadily gone downhill.
Researchers at the Centre for Disease Control in Atlanta, USA have visited Uganda recently to conduct further tests and follow up leads. Some believe there could be a link with the parasite which causes river blindness (onchocerciasis), since most of the affected children live in areas where this is prevalent. The researchers also met with Ugandan health officials to talk about trials for treatments which could start as early as May this year. Investigators hope to include 80 children in the trial. For parents like Marolena and Michael, this news is no doubt welcome, though for their already very sick children, it is too late to bring any hope.