When President Museveni visited the Atanga Health Centre IV in Pader district where the health ministry had opened one of the emergency response centres to handle victims of the nodding disease, he spoke to the medical personnel on the scope of the response.
When it was time to go, a little boy, Francis Ongwec, 13, one of the patients, kept waving his hands, until one of his neighbours said he had something to say to the President. The President walked back slowly, stood before him and waited...all he said was 'how are you'. When he responded in Acholi, his face lit up.
Sometimes, all it takes to comfort victims and families that have been severely affected by this mysterious disease is to reassure the people that you are doing everything possible to relieve their pain. It is not just the pain that the victims go through, the psychological torture that the parents are facing; knowing that their children's lives are slowly slipping through their hands hopelessly is quite devastating.
Dr. Opar Bernand, who has been coordinating the emergency responses, said there are many parents who, in despair, have wished their children to die quickly than to let them live in excruciating pain and die slowly.
"It is quite difficult. The parent can't leave home to go and dig because anything can happen to the child. They can hurt themselves, get burnt or get lost. In some cases, because the brain of the child is progressively being damaged, they lose their senses and wonder off into the wildness and fail to find their way back home.
Parents discover them in the bushes dead. In some cases, instead of the children eating chicken, you find the chicken pecking on their wounds," he said. Early detection and reporting to a health centre has shown to be very helpful.
Atanga health centre alone registered 596 patients ever since the emergency centre was opened and 414 of these were screened for nodding disease. With medical support and feeding, most of the victims recovered, except 15 who were still at the centre.
However, the worry of health workers was that the severely affected children were not brought to the hospital.
"They bring the healthier ones who get medicine which is taken home and shared with the severely affected ones because parents don't want to expose the very sick children.
Sharing doses affects treatment. We send health teams to the villages to look for these children and once they are brought here, they are abandoned because their parents will not come for them," Dr. Opar said.
Dr. Beatrice Odongkara of the Atanga Health Centre IV said their biggest challenge is feeding. Most of the children are malnourished and need a special feeding programme.
"Despite the various challenges, we have made progress. When the children, are fed, they recover more quickly which shows that starvation is a key issue that needs to be handled," she said.
The Government has already procured emergency vans to evacuate patients from the villages to the health centres in Atanga, Palabek-Kal and Kitgum which are all well stocked with drugs. It is also due to procure graders to clear farmland to make it easier for families to quickly plant quick maturing food crops to stave off starvation.
However, Ugandans can also respond by providing food items; complementing the Government efforts to build the capacity of emergency health teams and create awareness about the need to seek urgent medical help. Standing together with and doing something for the victims of nodding disease should be a patriotic duty of all Ugandans.
President Museveni who addressed a rally at Atanga Secondary School in Atanga sub-county said the disease has to be managed systematically.
"We are investigating this disease. There are suspicions that it is connected to river blindness which is caused by flies found along the rivers but this has not been confirmed. I am coming back here, and using Mega FM, we shall command the swallowing of only two tablets by everybody here to kill the worms that cause river blindness," he said.
According to reports, the cause of the disease is still unknown currently but it is believed to be connected to infestations of the parasitic worm Onchocerca volvulus, which is prevalent in all outbreak areas.
O. volvulus, a nematode, is carried by the black fly and causes river blindness. In 2004, most children suffering from nodding disease lived close to the Yei River, a hotbed for river blindness, and 93% of nodding disease sufferers were found to harbour the parasite - a far higher percentage than in children without the disease.
A link between river blindness and normal cases of epilepsy as well as retarded growth had been proposed previously, although the evidence for this link is inconclusive.
Of the connection between the worm and the disease, Scott Dowell, the lead investigator into the syndrome for the US Centers for Disease Control and Prevention (CDC), stated: "We know that [Onchocerca volvulus] is involved in some way, but it is a little puzzling because [the worm] is fairly common in areas that do not have nodding disease".
Andrea Winkler, the first author of a 2008 Tanzanian study, has said of the connection: "We could not establish any hint that Onchocerca volvulus is actually going into the brain, but what we cannot exclude is that there is an autoimmune mechanism going on."
In the most severely affected region of Uganda, infection with microfilariae in epileptic or nodding children ranged from 70% to 100%.
The Centre for Disease Control is also investigating a possible connection with wartime chemical exposure or whether a deficiency in vitamin B6 (pyridoxine) could be a cause, noting the seizures of pyridoxine-dependent epilepsy and this common deficiency in disease sufferers.
Older theories include a 2002 toxicology report that postulated a connection with tainted monkey meat, as well as the eating of agricultural seeds provided by relief agencies that were covered in toxic chemicals.
As Ugandans, we should learn from our past mistakes and avoid politicising disasters such as these. The war in northern Uganda dragged on for years because it became a political gamble for many people, and only took the decisive action of President Museveni to put an end to it.
This should not be another gamble, people are dying and we need a collective action to save our future generation.