Agnes Apio has to tie up her son Francis before she can leave the house. In his state, he is a danger to himself. Where once he walked and talked like a normal child, now he is only able to drag himself along in the dirt. Francis is suffering from “Nodding Disease,” a brain disorder that, according to CNN, afflicts at least 3,000 children in northern Uganda, leaving them physically stunted and severely mentally disabled.
“I feel dark in my heart,” Apio says as waves flies away from her son’s face and mops up his urine after a seizure, “This boy has become nothing.”
“Reportedly the children gnaw at their fabric restraints, like a rabid animals,” says The Daily Tech. The article calls them “zombie children,” having “no cure” and “no future.”
First the victims become restless, can’t concentrate. They say they have trouble thinking. Then comes the nodding, an uncontrollable dipping of the head that presages the disease’s debilitating epilepsy-like seizures. It is this nodding motion that gives the illness its name.
Nodding Disease first attacks the nervous system, then the brain. As the epilepsy-like seizures progress and worsen, the children become less and less like themselves, and more and more distant and blank. Eventually the brain stops developing and the victims’ bodies stop growing. So far, no patients have recovered.
Grace Lagat also has to tie up her children in order to leave the house. Daughter Pauline, 13, and son Thomas are bound hand and foot to keep them from shuffling away and getting lost. Pauline recently disappeared for five days.
Experts are baffled as to what causes the disease, which only occurs in children. Early findings suggest a confluence of the presence of the black fly-borne parasitic worm Onchocerca Volvulus, which causes river blindness, and acute vitamin B6 deficiency.
According to the Centers for Disease Control, onset usually takes place at the age of five or six and progresses rapidly, leaving the victims severely mentally and physically handicapped within a couple of years.
Victims can wander off and disappear. Some 200 “secondary deaths” have been blamed on fires and accidents caused by children with the disease.
Physicians and workers with the Ugandan Red Cross are frustrated by what they see as a lack of urgency in the government’s handling of the disease. After months of lagging, officials have only begun an official tally of cases within the last two weeks.
The situation was already dire when a team from the World Health Organization visited northern Uganda in 2009. CNN quotes one doctor from the team, Dr. Joaquin Saweka as saying, “It was quite desperate, I can tell you. Imagine being surrounded by 26 children and 12 of them showing signs of this. The attitude was to quickly find a solution to the problem.”
Solutions, however, have been slow in coming.
Doctors have been treating the seizures caused by the disease with epilepsy drugs, but their efficacy is limited. The drugs only slow the progression of the disease, but fail to stop it.
Currently, Ugandan government officials say that they are doing everything they can to fight the epidemic. They say that new epilepsy drugs are being tried and special training has been instituted for local health officials. This, they say, is as much as can be done for a disease whose cause and cure are largely unknown.
Saweka said, “When you know the root cause, you address the cure. Now you are just relieving the symptoms. We don’t expect to cure anybody.”
Watch a CDC video about Nodding Disease, embedded via YouTube, below: