Nodding Syndrome: The Hardest Talk
I had heard of nodding syndrome for the first time in 2010 during my first short visit to Uganda. While researching Uganda’s culture and the best sites to visit in and around Kampala, I came across an interesting and profoundly moving article about an unusual neurological condition that affects only children, typically between the ages of 5 and 15. This type of epilepsy, of unknown origin, manifests itself with involuntary head-nodding followed by the sudden collapse and fall of a child due to the loss of muscle tonus. The neurological condition is region-specific and has been reported to affect thousands of children in certain parts of Africa for almost several decades. The endemic regions are in close proximity to each other, namely Northern Uganda, South Sudan, and Southern Tanzania.
During my next trip to Uganda, in 2012, I decided to visit the endemic regions in Northern Uganda and examine the condition first-hand. My contact in Uganda’s Ministry of Health told me about the Pader district that was particularly affected. I was referred to Dr. Ocaya, a chief physician and head of the health clinic for children with nodding syndrome. Soon after, I went to Gulu, the biggest town in the region, where I hired a local driver to take me to the rural countryside, which could be reached only by driving on dirty, dusty roads.
After four hours of driving, we finally arrived at a small village in Pader where the rural clinic was located. Dr. Ocaya met me with a warm welcome and immediately started talking about the neurological condition as we walked around the hospital. I will never forget my first encounter with the sick children; it was unlike anything I had seen before. The clinic consisted of one small room, modest but bright, without a single hospital bed in it. Dozens of the most severely sick children were lying on mattresses placed on the floor. Some of them were trying to eat. That, Dr. Ocaya said, was the most difficult task for them, because eating or only thinking of eating can provoke the seizures. Knowing that many of them had simply stopped taking food.
I vividly remember a little girl in a stained pink dress, with the saddest expression I have ever seen in my life. She was twelve-year-old but she looked more like she was six; tragically, the chronic malnourishment in young children leads to irreversible cognitive and physical stunting. The other children were in a similar condition too, some of them so weak that they were unable to stand or even sit. Their heads were covered with scars because many of the children with epilepsy had suffered serious injuries after losing consciousness; and I witnessed a severely burned child who had fallen into the open fire.
Although thousands of children in the region are affected, due to a lack of healthcare professionals, most of them remain in their villages, with their families, taking medication at home. Dr. Ocaya told me that some parents were so afraid of the falls and injuries that they had to tie them to their dogs to prevent them from walking into dangerous environments during the seizures.
“All of them will eventually die” – Dr. Ocaya said. “Although we manage to control the epileptic seizures and falls with valproic acid (an antiepileptic drug), we still cannot stop the mental deterioration caused by the condition. After several years of illness, with progressive mental decline in combination with malnutrition, the children will die, a horrible sad death.”
Then, Dr. Ocaya and I set off to the nearest village; he wanted to show me how these children lived and how their families coped with their condition. On our way there, I asked him what he thought caused the illness. He said that some doctors argued that it might be caused by the parasitic worm Onchocerca volvulus, that is to say, the inadequate immune response to the parasite. The parasite causes Onchocerciasis, a condition very common in the area. Dr. Ocaya personally disagreed with this theory because nodding syndrome was endemic only in certain areas, unlike the Onchocerciasis. He added that the region had been a war zone for many years and a lot of humanitarian aid and food (namely, cereals and legumes) had been distributed there. Many of these packages were evidently contaminated with certain fungi, which might have adversely impacted on children’s health. Worse still, the invading organisms could have settled and further proliferated in the soil, water, and food. “The inability to prove it does not disapprove this theory”- he concluded.
When we finally got to the village, the residents gathered around us, staring and smiling with puzzled looks on their faces; there was an unexpected visit by me, a foreign doctor. I spent an hour listening to farmers’ hardships and the sufferings of their daily life, as well as lack of sanitation facilities and clean water. Having heard that epilepsy is highly stigmatized in those communities, I was very keen to hear their version of what might have triggered the condition. Of course, the residents had their own explanations regarding the outbreak: an evil spirit punished some of the children in the area because of their involvement in a recent bloody war. Thousands of them were brainwashed and then recruited and used as child soldiers, serving in the criminal rebellious army under the leadership of notorious Joseph Kony.
It was getting late and we had to return to Gulu. Although the villagers seemed indifferent to my unease before we parted our ways I noticed a trace of hope in their eyes. Perhaps, they believed I would one day return to bring them a miraculous cure from the modern world.
On the way home I couldn’t stop thinking about those unfortunate people who lived in grinding poverty, deprived of basic life necessities, and the poor parents who were powerless to help their sick children. And I thought about my brave new friend, Dr. Ocaya, the only black doctor in the area, trying to help those who desperately needed it – children with nodding syndrome. I felt the urge to act immediately. But, what could I do? After thinking for a while it occurred to me that some sort of protective helmets, lightweight and breathable, could prevent head injuries during and after falls. Perhaps, just a small contingent at the beginning, before I could find corporate sponsors to provide more aid.
In 2014, I returned to Uganda with my wife in order to arrange the delivery of the first contingent of head protectors, which I had paid for myself. But there was more bad news – Dr. Ocaya had suddenly died before we managed to meet with him. I asked some people I was referred to if they could help me deliver the aid, but the helmets never reached their destination; they were stolen and never recovered. Sadly, no matter how hard I tried over the following years, I just couldn’t find the sponsorship for my mission in Uganda. But, for me, it is only the beginning and not the end of my attempts and efforts.
Apart from the global response by the WHO’s and the UN’s defined goals to reduce mortality rates in African children and poverty across the continent, numerous NGOs and other initiatives are already out there providing aid in Africa, offering adequate medical treatment, and helping build health infrastructure. Also, there are many opportunities to provide support and medical assistance to rural communities through volunteer programs.
As a physician and a human being, I feel a personal responsibility to continue helping those who suffer most, for the exact reason the poet, John Donne, once said: “No man is an island entire of itself; every man is a piece of the continent.” I find myself in Africa, a continent that calls out to me, echoing the untold sorrow of its good people; good people whom I always pledge to help.
Written by DR. BORIS DZUDOVIC, Cardiologist, Posted on March 13, 2019
