Nodding Syndrome – Northern Uganda

At the end of 2012 I travelled to Northern Uganda, I went to see my sponsored children but on my travels, there was a particular epidemic that hit me in the core of my being. It was at the time called Nodding Disease, now medical professionals in Uganda are referring to it as Nodding Syndrome. The below was posted on my previous blog, ‘Mamamia’ then also published this post. I then used the footage we’d taken in Uganda to create a story which was aired nationally on Network Ten LATE NEWS.  All pictures in the below story were taken by either Sarah Rudolph of myself on our visit. I am planning a trip back there this year, and my heart is still with these children, I will never forget the conversations we had and the trauma I witnessed.Here is the article in full as it was published last year¦..

War, murder, torture, rape, cannibalism. Welcome to the aftermath of Kony and his Rebels.  As the recovery from the war continues in Northern Uganda it seems this fragile nation has been dealt another blow. Nodding Disease is sweeping through the region, literally taking out a generation with it.

Let me tell you about Nodding Disease.  It is a disease that only has recently made itself known, the first case in this area being recorded around 2007.  It affects children between the ages of 5 and 15; symptoms include nodding uncontrollably when presented with food, also nodding off in a dazed kind of state.

Seizures, similar to epilepsy, elephantiasis symptoms, limbs not growing, erratic behavior, dental abnormalities, uncontrollable drooling, vacant facial stares, elephantitus and retarded physical growth to name a few.

A lot of the children with Nodding Disease present with severe burns to their body, they have either had a seizure and been burnt by the family’s cooking fire, or they have (in a state of daze) thrown themselves into the fire. Children erratically have run off into the bushes and stepped on animal traps, breaking and splitting their legs open. Children have also drowned after throwing themselves in the river unintentionally during a seizure or whilst in a dazed state.

As the child is in a daze and out of it, the cases of sexual violence against the young girls suffering Nodding Disease is very high. Resulting in numerous cases of (on average) 14 year olds pregnant and unaware of what happened or who the father is. Nodding disease also affects their memory so there is no hope of identifying their rapist even if there was an opportunity to do so.

It is common to see a child tied up at the family’s hut or out the back like a dog.  This is done by the parents to keep them safe as many of them will have burns or other injuries caused by their erratic behavior.

Girl with Nodding Disease, sitting with her Mother.

Because food seems to be the catalyst for reactions some parents have taken the measure of depriving their children of food. What is a better death, nodding disease or starvation? Should we even have to ask such a question in 2012?

In my medically untrained mind I immediately place it to be related to some kind of chemicals used in the war. The war finished 6 years ago, it had gone on for just over 20 years meaning these children were all conceived at some point during the war. However, medical experts, (of the few that have done any research the northern regions of Uganda), think differently.  In saying that, we have no idea where this has come from or what is causing it.

On a recent trip to Northern Uganda I was able to interview the Kitgum Regional Health Development Officer Dr Asuman Lukwago who is on the front line in this bizarre medical conflict.

Walking around the hospital.

It’s clear even he and his team are not convinced of the watery excuse of black flies that the Ugandan government has currently chosen to stand on. Black flies being around for so many thousands of years and never having had an affect like this before.

I considered, having witnessed the extremities of human degradation that it could it be somehow related to stress levels that have not been measured on our planet before, as many of the women were forced to fight in the war, often being forced to kill their own family and even cook and eat their flesh. (yes you did read that correctly)

Is it related to severe malnutrition?

Is it a spiritual oppression that manifests itself physically?

When I entered the Atanga clinic that has a ward for Nodding Disease the doctor saw us with a camera and was keen to chat.  His eyes bled desperation. ‘Take your pictures, tell the world we need help.’

A child with Nodding Disease.

The hospital ward was an old tin shed with mattresses on the floor.  It was filthy and smelt strongly of feces and vomit. The mothers hold their children with tears in their eyes.  The footage we took speaks for itself and there are no words I could use to give it justice.  One child I will always remember, he’d had a seizure and in the process had fallen and smashed his jaw.  It is clearly broken.

There is no medical assistance there to help mend his jaw; he is one of the lucky ones given anti seizure medication to prevent a seizure happening again (at least while he is at the hospital and on the medication available there). I’m picturing our driver whose leg was shot in the war and after 7 months bed-ridden it has healed set in a somewhat mangled state. I’m praying this young boy’s jaw does not have the same result.

Out front of the hospital.

Someone asks me how I feel.  Wow what a question.  I feel overwhelmed that in 2012 this scene before me is actually happening. The sheer injustice.  I feel desperation for these beautiful children of which some are in physical agony yet there is no pain relief coming, in fact they will be lucky to even get a meal today.

Anguish overwhelms me and I just want to cry, but I am there to be their strength, this kind of work is not accompanied by tears.  I want to empty my pockets, give them my clothing, sell every piece of excess material items I have back in Australia to be able to give more, to do more.  Surely I have to do something about this. I’m thinking of my last trip with my toddler to the doctor back home in Australia where we sat in an air-conditioned waiting room, a roof over our head, medicine readily available and I actually had the nerve to feel frustrated at the length of time we had to wait.

The little boy with the broken jaw, only being treated with panadol at this stage as nothing else is available.

So what helps this condition of Nodding Disease? On a practical level warm clothing does, the children seem to have more severe reactions when they are cold. Good nutrition also sees an improvement and physiotherapy has shown positive signs. One girl we see who is jumping around erratically couldn’t sit down at all two weeks ago¦ however after only two weeks of physiotherapy she can sit (although it takes a bit of convincing she sits down to show us for a minute).  So where to go from here? As the doctor asked, ‘tell the world, we need help’

This and our footage is my response. Until then, pray for his country.

‘To whom much is given much is expected.’

Emma