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Support Nodding Disease victims; the most urgent challenge to a northern Uganda child

12 year old Nancy Lamwaka one the thousands of victims of LRA war but now tormented by a new disease.

Over the last few days I have received thousands of emails in response to the video I put out in response to KONY2012. Most of the emails were from grateful people who had learnt something from my video.  I am unable to read all the responses and reply you all at this time but your efforts are very much appreciated.

Most responses indicated they want to support the Ugandan child and be sure that the help goes to the right cause.

The cause

More than 3000 children in northern Uganda are currently battling a mysterious disease that has come to be known as nodding disease. Please read more from Wikipedia about Nodding Disease. There are so far 170 reported deaths.

In brief,  nodding disease is a mentally and physically disabling disease that only affects children between the ages of 5 and 15. Victims get seizures on the smell of food or when they get cold. Read more from previous blog

The World Health Organisation and Centre for Disease Control (CDC) have been working on research to establish the cause and how the disease is transmitted with no success so far.

Why we need to act fast:

With the healthcare system in northern Uganda wrecked by war and in a country where the right to healthcare is not guaranteed, most children suffering from this disease have been going through unbearable suffering. Parents are forced to painfully tie their children to trees.

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Africa, Uganda

Uganda Nodding disease patients; Is it a crime to seek better healthcare?

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.

Police guarding the ward at Mulago.

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.

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