Nodding Syndrome: A new war in Northern Uganda

As the guns go silent in northern Uganda, another battlefront has opened. The battle is about finding treatment for the over 3000 children who are nodding their heads in pain. Their parents can no longer go to gardens since they spend all the time watching over the falling and violently convulsing kids whenever attacked. Weeds are eating up the crops. Hunger is knocking on their doors unless something urgent is done to rescue the situation. In some homes, when the sickness gets so severe, men are abandoning their wives claiming they can’t provide for and stand the violently convulsing children. Schools are reporting reduction in attendance as affected children drop out of school. 

The nodding syndrome, whose cause and cure are yet to be found, has been ravaging the area since 2003, according to accounts from elders, but only got worse in 2009 and 2010 when several children developed intensive spontaneous seizures. Convulsions attack children in a manner akin to that presented by epileptic patients. Some of the kids are said to present symptoms of river blindness and doctors here say most of the cases are people living in river belts. The elders say at first black flies would bite children who would then develop skin rashes and later fall sick. 

A sign post at Pulabek Health Centre III in Lamwo District, Northern Uganda where patients with nodding syndrome are handled. The disease has affected thousands, and killed hundreds of children in the area. Photo by Mubatsi A. Habati

When we visited Atanga Health Centre III (the smallest hospital unit in a district), bony kids lie helpless in wards fighting for their lives. The nurse attending to them says they are suffering from the nodding syndrome, a disease which has no scientific name yet. The sick kids are a centre of attraction to a swarm of flies. Saliva cannot stop oozing from the wide-open mouths of Uganda’s little angels. The nurse on duty says children with nodding syndrome are uncharacteristically thin and with incessant flow of saliva. 

It is quite a sad spectacle as worried mothers sit with heads resting on chins at Atanga Health Centre III in Pader district. They long for the time their children will miraculously recover. But this is just building hope. The parents just like the sick kids are needy. It is even more devastating to go the hospital where doctors tell you they have failed to diagonose the cause of sickness. Nurses at this health centre just like their colleagues at other nodding syndrome treatment centres in the region, are giving the patients sodium valporate to prevent convulsions, Vitamin B complex to strengthen the kids’ muscles and Vitamin A to improve their sight. Those are the medical interventions being done so far.

But even with all these interventions parents like Alex Opoka, father of 15 year-old Scovia, don't notice any change in the health of their children. Opoka says his daughter has been suffering from the nodding syndrome for the last 8years and she was among the children MP Beatrice Anywar ferried to Kampala for treatment in April. Scovia and 3 others are fighting for their lives at Kitgum Hospital after they left Mulago National Referral Hospital. Scovia just like other kids is malnourished and stunted. The medical practitioners at the hospital say they are feeding the sick kids maize flour and beans; which are not enough nutritional diet for these patients. When NGOs like ActionAid International Uganda, FIDA and Uganda Women Network distributed food and clothes to the children affected by the nodding syndrome, their parents and caretakers could afford a momentary smile. Yet this smile could be kept forever if the real cause for nodding syndrome is found and the disease treated.

The affected communities and the district leaders are unhappy with government response. When government did send in a verification team early June, even after the district health officers had done ground work and informed the ministry of health of the disease, the team leader is keen to keep the findings outside the public domain.

By Mubatsi Asinja Habati