The Nodding Syndrome

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
— Margaret Mead

I’ve been pleasantly surprised that as I have gathered together with other like minded women, we have indeed been able to bring change and make positive impact to our sisters and children both in our country and abroad.  Each time I have wondered, if people knew that they CAN make a difference, would more of us do it?

This is an excerpt of an article I had published on Mamamia end of 2012.... you can read the full article here.

“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 delt another blow.  “Nodding Syndrome” is sweeping through the region, literally taking out a generation with it.

Let me tell you about “Nodding Syndrome”.  It is a sickness 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 Syndrome 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 Syndrome 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 Syndrome 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.

Young boy suffering from nodding disease outside his family home

Young boy suffering from nodding disease outside his family home

A girl with nodding disease, sitting with her mother at the hospital

A girl with nodding disease, sitting with her mother at the hospital

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 syndrome or starvation? Should we even have to ask such a question in 2012?”

While I was in Uganda I visited a Nodding Clinic. I will never forget the doctor that day pleading with me “please take photos, please let me talk to the camera, tell the world what is going on here.  We are desperate”. Those words and the desperation in his eyes have been the motivation to take action and get involved in doing exactly as he asked. This saturday you can also be part that action. Come along to C3 City Campus for PAMPERED WITH PURPOSE. Our entire church will be transformed into a beautiful day spa, where you can come along and be pampered for a great cause. All treatments are $20 and all monies raised go to HOPE FOR HUMANS who have only recently set up on Northern Uganda to specifically help children and families affected by Nodding Syndrome. They are providing lifelong medical care and supportive social services. You can read more about their strategy and their work at

Please jump online and book your treatments come along and be pampered for a great cause. See you there!

Emma Mullings

To read more of Emma's blog posts & articles visit her website -