Victims of the nodding disease attending a meeting with Health Ministry officials who visited together with Members of Parliament from the Acholi sub-region. File Photo

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.

As residents give their tale of misery, another bundle is brought in on a wheel barrow. Wrapped in old bed sheets, her father wheeled her up to the front. He gently lifts and places her on a mat. From the way he holds her, one could tell that she did not weigh more than five kilos, yet she is 15 years.

Hers is different, whereas others can sit or stand, she on the other hand lies on her rather bonny limbs-all day, all night.
Another eight year old boy lies among other children with no one tending to him. He cannot close his mouth. Flies feed on the green like substances in his teeth. He does not seem to have energy to blow them away from him. His eyes are closed but tears keep rolling down his cheeks endlessly.

They are just but a representation of other children in different villages that are yet to come to terms with disaster that befell them since 2003. These children have different signs and symptoms but they also share a lot in common. They are malnourished, retarded, and they nod.

Experts say
If the disease is detected and managed in its early stages, it could be controlled.

WHO country representative Dr Joaquim Saweka says nodding syndrome is a chronic damaging illness but but can be contained if detected at stage one.

The disease that has consistently hit headlines for the last two to three months affects children in five stages with the initial stage where the symptoms are triggered by the sight of food served or cold weather. The child goes into a short head nodding attack that lasts one to two minutes for at least two to three times a day.

While doctors are still battling to find the cause and mode of spread, available data shows that the disease spreads from one place to another.

First 192 cases were registered in Kitgum and Pader in 2009 but over time, it has spread to other districts of Lamwo, Gulu and some traces in Masindi. The numbers have also increased from hundreds to thousands.

For now, experts remain baffled about what is causing the disease as the Centers for Disease Control is yet to come up with final results from the samples taken two years ago.

Efforts are also underway at Gulu University to research the cause, mode of spread and how the disease can be cured. But until then, families in this region have to come to terms with the sad reality while government is taking its time to intervene.

By Agatha Ayebazibwe, Daily Monitor

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