I understand you were the first medical worker to notice the nodding syndrome. How did it start?
I noticed it after observing some children in my village of Tuma-nguu nodding whenever they were served with food. We wondered what was causing that because it prevented the children from eating. When it escalated, I took three children to the late Dr Agola to find out what was wrong. He did some tests but said we could not afford the costs since it was an unknown disease.
So, he wrote a letter referring us to the district health officer in 1998, where Vincent Oyet was care-taking. I took the children to Oyet, who referred me to district health inspector John Omoo, who again referred me to the medical superintendent Kitgum Hospital, Dr David Kitara. He took the children to the theatre to test skin snippets and other samples. But those days there was no cost-sharing in public hospitals so the poverty- stricken families of the affected children could not afford to pay the bills. So no tests were carried out.
Do you recall the names of the first three victims of the nodding syndrome you took for treatment?
They were Sunday Kibwota, Monica Abalo and Scovia Lakot, who were about five years old then.
Where are they now?
Kibwota has since died, Lakot was crippled by the disease and can no longer walk, while Abalo recently gave birth by caesarean section and is admitted to Kitgum Hospital because her condition has worsened.
Has there been any improvement since then?
The number of children affected by the disease has since escalated to at least 114 people in this village alone.
You said nodding syndrome was first detected here in 1998, but the Ministry of Health says it received the first report about the ailment in 2009. What do you think caused this delay?
The delay came about because district health officials and the government always undermine our reports to them, they think that what we give them is not true. When I reported the sickness, nothing was done about it.
Was the delay in the district here or it was at the ministry?
The delay, I think, was by the district here because if they had forwarded my report to the ministry may be they (ministry) would have acted on it faster.
Recently, the government and other development agencies came up with measures to fight the syndrome. Do you think their efforts are bearing some fruits so far?
Their struggle is not bearing any fruit. This is because politicians are meddling in the fight against the nodding syndrome. When taking the nodding children to Kampala, we were arrested in Gulu, which was as a result of conflicts between politicians.
What should be done to find a solution to the disease?
I would like experts and senior medical workers to put more effort into finding out the causes of the syndrome and how it spreads because we are already defeated. We do not know how it is caused, spread and even the name of the disease has not yet been found.
But what do the local people here think could have possibly brought about this syndrome?
People think it could be a result of the LRA insurgency because different kinds of weapons were used here. What kind of disease is this where different tests are done but nothing is found? The cure for HIV/Aids is not yet known but what causes it and how it is spread is known, but with nodding, nothing is known about it.
Some people have fronted the idea of using traditional means to find out the cause of the syndrome. What is your view?
Last year, we brought some medicine men from Agago District to perform rituals to chase away ‘ghosts’ that were disturbing school children in Pawena (Lamwo District). It was a very scary situation because those children (hit by mass hysteria) were biting one another. Because the children’s conditions improved, we called them to do the same thing with the nodding children. But there was no improvement.
What is the condition of the children you took to Mulago Hospital?
Thirteen children were picked up from Akwang Sub-county and 12 from Amida Sub-county. The most visible change in them was their personal hygiene because they were cleaned regularly as well as the frequent change in diet. But there is no improvement on their medical conditions.
When Acholi Paramount Chief David Onen Acana II toured his chiefdom he said the food consisting of beans and posho that is given to the sick is not nutritious enough. What is your response to his view?
I would like to agree with what the paramount chief said because when we were at Mulago hospital, the way the children were fed on different food varieties greatly improved their conditions. Even the rate of fits and seizures, had reduced.
As village health teams for the nodding syndrome, are you getting any form of facilitation since you are recruited as volunteers?
There is no facilitation that the district is giving us except Shs10,000 that we received after the orientation training. When district health workers come for outreach here, they are paid a lot and promptly, yet, we, who help them are not given anything.