Mr Joe Otto, a member of the village health team in Kitgum District, was one of the first people to detect the nodding disease syndrome. Jimmy Kwo interviewed him. Below are the excerpts:
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.