Yesterday March 5, I was part of a group of women from various organisations who visited Mulago hospital acute pediatric ward to pass on a few items to children suffering from what we have come to call Nodding Disease. I learnt about the condition in 2006. It was a friend from the US who was here to work with a team investigating the condition that had told me about it. She wondered why it had not made it to the media. I really wanted to go up north and do a report or two about this mysterious disease but I never made it because at the time I worked at NTV as a reporter and it was a busy year with Kony peace talks that took precedence. Well I failed to get back to the story in subsequent years.
In brief nodding disease is a mentally and physically disabling disease that only affects young children mostly between the ages of 5 and 15. It is currently in Uganda South Sudan and Tanzania. Victims get siezures on the smell of food or getting cold and the cause is unknown and so is the cure.
About six years down the road, on Monday I was standing together with women from Uganda Women Network, FIDA, Isis-WICCE and the activist Jackie Mwesige who has been pushing the women movement to do something about this. The women had come with blanks and some items for both the child and their caretakers to hand them over. The hospital administration had been informed in time.
I arrived at about 1:15pm and I was quite surprised to see police deployed at the unit. At first I thought we were in a wrong ward, may be a ward where a wanted person was being kept. We were only here to show our support to 25 nodding disease victims who were transported to Mulago on March 02 after local leaders realized they were not getting much hearing from the central government in Kampala.
All the children are from Kitgum and they part of 3000 children currently suffering from this unknown disease. The nodding disease was given prominence in Ugandan leading papers late last year and since then there has been major coverage even in international media. It took us two hours to negotiate our entry into the ward. Kitgum woman Member of Parliament Beatrice Anywar who has been at the top of calling for well-wishers to support families was present.
Continue reading “Uganda Nodding disease patients; Is it a crime to seek better healthcare?”