Medics closer to finding the cause of Nodding disease

The Ministry of Health says years of intensive medical research is closing in on the exact cause of mysterious Nodding Syndrome disease amongst children in Northern Uganda.

The government health agency says new clues strongly associating the disease with a group of parasitic nematodes, Filarial worms have been seen in 95 percent of children affected by the disease.

Dr Richard Idro, a pediatric neurologist at Makerere University heading research and investigation of nodding syndrome describes the worms as thread-like roundworms which enter their victims through repeated bites of black flies dominant along Aswa River valley and Pager River valley.

Dr Idro says isolating the worms in samples collected from children affected by nodding syndrome ushered a major breakthrough in treatment and investigation of the cause of the disease.

“One of the initial results of the investigations, that time showed that, the disease may be associated with the filarial worm. That association was quite strong, it was observed here in Uganda, South Sudan and Tanzania among other countries which had been affected by the disease. Because of that, the Ministry of Health tried to put in place interventions to eliminate the transmission of the filarial worm and since that was put in place, we stopped seeing new cases of the syndrome at the end of 2014, and to date, we don’t have any new cases of nodding syndrome for more than five years” Dr Idro said.

Dr Idro says the new clues build on initial findings that infections of Filarial worms was most responsible for causing Nodding Disease.


According to Dr Idro, they are also interested in ascertaining why Filarial worms suddenly triggered neurological epilepsy in 2007 after its existence in Northern Uganda for generations.

He says their findings will be weighed against research outcomes in three other nodding syndrome affected countries – South Sudan, Tanzania and Cameroon.

“What is left is for us now to determine exactly how this filarial worm causes the disease. We have a lot of studies which are going on with our partners from different countries, we are trying to look in detail, in laboratories how this worm causes the disease. We have literally eliminated the worm, and stopped the disease. We have demonstrated a stronger association between the worm and the disease,” Dr Idro said.

The National Coordinator of Nodding syndrome control program in the ministry of health Dr Alfred Mubangizi says the fight to control nodding syndrome has faced a lot of challenges in terms of finance mobilization among others.

Mubangizi says the government has set up a multi-sectorial intervention involving several ministries including, health, finance education gender, labour and social development and the office of the Prime Minister.

He says, currently they are planning to take over all the Nodding Syndrome rehabilitation centres for proper management.

The research being done is expected to be finalized in approximately three years and is expected to inform the drugs to be used to treat the syndrome. Nodding Syndrome was first reported in Northern Uganda in 2007. Since then, it has afflicted more than 1000 children in Kitgum, Pader and Agago districts.

It presents with cognitive failure, stunted growth and epileptic seizures amongst others. Its victims often die from seizures, burns or drowning.

According to the World Health Organization-WHO, Nodding syndrome is a neurological condition with unknown aetiology. It was first reported in Tanzania in the 1960s.  The age of onset in the vast majority of cases range between 5 and 15 years of age, but cases have been reported in children as young as 2 years of age.