Nodding disease, the new terror in Acholi sub-region

About 2003, symptoms of a disease started appearing in the northern Uganda. For lack of name, it was baptised from one of its notable symptoms - Nodding. Now almost every family in most of Acholi sub-region has a victim of the disease, and the communities there are not at peace.

Imagine if you gave birth to a child that is retarded! How about if you have to tie your child on a tree using a rope every time you have to engage in any house chores? Or you dread cooking food in your house because you know if your child smells it, they will collapse.

Now, stop imagining - for this is happening right here in Uganda. And it could be one of your relatives.
For the last three years, at least a family in the districts of Kitgum, Pader and Lamwo, has registered a nodding disease case. Following the threats from MPs on the Acholi parliamentary group to ferry the sick children to the ministry headquarters, health officials made a tour to the affected areas to assess the situation.

On Thursday, January 5, 2012, the health ministry officials, MPs from the Acholi sub-region and officers from the affected districts gathered at Kitgum District headquarters to discuss the way forward on the nodding disease.

Inside the hall where the briefing was held the air was thick and hot. It had dark brown curtains hanging in the 15 windows, and on the wall was a portrait of President Yoweri Museveni caked with thick dark brown dust. The silence in the room spelt out clearly the quagmire that engulfed Kitgum District and other districts around it. You could almost hear the breath intervals of the over 200 people in attendance.

And when the minister stood up to speak, it was not the normal exchange of pleasantries at those meetings. This time there were no people singing and chanting by the road side as is always the case.

The issue on the agenda was the dark days that have hit Acholi Sub-region since 2003. The issues at hand was not Joseph Kony’s brutal rebels. Nor was it Ebola. And not cholera. It is a disease which has been baptised a name from one of its notable symptoms - Nodding.

In two groups, the Health Ministry officials, the Acholi parliamentary group, civil society organisations and non-governmental organisations set off in convoy-like leaving clouds of dust behind.

Traumatised villages
Deep in the village of Tuma-Ngur, 18km away from Kitgum District headquarters, some residents were gathered under a mango tree at one of the homesteads with their children.
Nighty Adong holding her seven-year-old daughter stood away from the small crowd. Little Jacqueline, her daughter, cannot stand on her own for more than two minutes.

She has to support her because she frowns a lot and she relies on her gestures to know what she wants. Her skin peels off like that of a snake. Occasionally, big chunks of her skin falls off reveal the red part of her inner skin. Adong must keep alert all the time to keep flies away from sucking on her daughter’s fresh skin.

Next to Adong is Betty Olara who has 11 children, and five of them aged between four and 14, are affected by the disease. The linings on the two women’s faces tell the hard times they are going through.Carrying her last born child, who nods on her back, Olara narrates.

“It started in 2003 with my second child. Four others got it in 2008. I have since been struggling with them. I can’t do any work or house chores because the seizures come at different intervals. Every hour I am attending to a child under attack except when I tie them on a tree.

Two are almost mad and very violent. They walk around naked. When given clothes, they tear them off their bodies. My husband abandoned us saying I am cursed and he wants nothing to do with me and the children.”

When Micheal Odur’s 15 and 14-year-old sons were taken to Mulago Hospital, he was happy that they would recover from the disease that has crippled them since they were little while staying in a camp during the LRA insurgency.

But the scan at the hospital revealed that his eldest son had no brain matter in his head. Brian Ojok, Odur’s first born looks like a three year old baby. His eyes are sunken, and he can barely support himself to sit. He seems not to have control over saliva that flows from his mouth. Occasionally, Ojok defecates and urinates where he sits. He struggles to keep his eyes open. And so does his brother.