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.

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.

After talks we were allowed to hand over the items to families but entering the ward we had police warnings not to take any notes, interview victims or take any photos. If you had just landed in Uganda you would be excused to think that the police is trying to protect minors from being exploited. But this is the same police that arrested these children and their caretakers on their way to seek proper medical care at Mulago hospital.

Anyone who has worked out in northern Uganda knows well how the healthcare system just like other systems was wrecked by the more than two-decade LRA war. Access to proper medication for even simpler illness is a struggle so one can imagine if you have a child with a disease that nobody in the world knows much about.

In the ward, the room is no different from our other Mulago run down wards with a few little beds that even a 7 year old can’t fit in and some mattresses. I met Morris Oyoo who’s organizing the families and records all the help given. He told me he worked at Kitgum hospital as community health person in 2002. It was the first time he saw a child with nodding disease. He even points to a boy who’s about 14 years as being one of the first victims he saw.

Some children were on drips, others were playing about. Here they will get no cure but at least in Mulago the world can finally see their faces and their relatives can have a voice. Their story can be seen everyday on TV instead of daily updates on how much has been stolen from which government accounts. In Mulago they also get better attention than in Kitgum.

In our 30 minutes stay in the ward, Oyoo asks questions that grip your heart. “Is it a crime for those of us from northern Uganda to seek medical attention at Mulago? Is it a crime for us to bring our children to a national hospital?”

His statement reminds me of a discussion with a woman activist who recently asked me, what would government response be like if nodding disease was in Kiruhura? She was damn convinced it would have been difference. I was a bit skeptical, still a bit but Oyoo’s sentiment while referring to their arrest on their way to Kampala is well understood.  You would expect better handling of a people who have suffered decades of war and marginalization from the current government. You would expect the government to act better in the face of failure (to respond early to help victims and families).

Just today as I put this down, Uganda’s minister of health announced they are to train 70 health workers who will be deployed in the affected districts of Lamwo, Kitgum and Pader by March 09 to treat the nodding disease patients.

She also indicated that that the nodding disease victims who are now at Mulago would be discharged this week. It wasn’t clear why they would be discharged since the disease has no treatment.  Months after the severity of the disease was brought to national scene, we are still talking about “Ministry of Finance will release the shs 7 billion to open up treatment centers.” We don’t see timelines at all in these statements apart from the discharging victims from Mulago off from the national radar.

The 25 children that were brought to Kampala might be returned but we have learnt a lot. Some women’s groups plan to tie themselves to trees at the NGO Forum as a symbol of the indignity women have had to face as they tie their nodding children to trees in Northern Uganda. This is scheduled to take place tomorrow March 07. We wait to see more awareness on the situation and push for government to reduce this human suffering and loss of dignity.

 

View more images from the field by on Edward Ecwhalu’s Blog