From the Inter Press Service, writer Henry Wasswa describes the condition further.
On a wet earth littered with fresh fruit from a large mango tree in Tumangu village in northern Uganda, Betty Olana (42) sits on a papyrus mat watching over four emaciated children infected by the mysterious nodding syndrome that leaves victims mentally challenged and nodding repeatedly when they see food or cold water.
One of them is her daughter, Joyce Laram (15), who sits with her mouth agape, and saliva running down her chin. The sick children rarely speak and even when the do, they utter unintelligible words only understood by their parents.
“It is mostly at night, when the moon is up that she gets delirious. She hardly gets sleep at night. She cries out suddenly and we have to tie her up. She is now saying: ‘I am seeing ghosts. The ghosts are there. I am seeing them with my eyes. Please protect me,’” Olana told IPS of her daughter who was completely normal until the age of 10.
Victims of the unexplained neurological condition experience numerous symptoms, including continuous nodding, mental retardation, epilepsy, rashes and trembling hands. Many of the infected also suffer from malnutrition as their seizures are triggered by food.
“At the beginning, she started nodding. She has been on medication (for epilepsy) for a long time. The medical people say it is epilepsy, but I do not think so. I think this child, like the rest in this village, is haunted by the spirits of the dead,” Olana said.
Health experts say that the disease is non-communicable. But scientists remain in the dark about the fatal disease that has no known cure, and which first appeared in Tanzania in the 1960s. The Ugandan government estimates that as of January, 200 children have died from the disease.
The children have to be watched constantly as some have fallen into fires and rivers, while wild animals have eaten others. Some parents tie their children to trees or lock them up when they go to farm or to the market. But many have been abandoned.
Now, parents and relief workers in northern Uganda, where nodding syndrome is prevalent, are angry that the government is not doing enough to combat the disease.
The region has been left devastated by the country’s war with the rebel Lord’s Resistance Army (LRA), headed by Joseph Kony. It was one of Africa’s longest-running conflicts, which began in 1978 and has since moved to neighbouring South Sudan and the Democratic Republic of the Congo.
The LRA has been accused of human rights abuses, including the abduction of 20,000 children, the murder of almost 100,000 civilians, mutilation, slavery, torture and rape.