Breakthrough in fight against nodding syndrome

Date: 16 February 2017

Introduction: Nodding syndrome can be prevented and treated, according to research by Professor Bob Colebunders (UAntwerp). He is now hoping to work with other organisations to launch efficient prevention and treatment campaigns.

Until recently, nodding syndrome was considered a mysterious, untreatable disease that often had fatal consequences. Previous studies carried out by Prof. Colebunders’ team have demonstrated that nodding syndrome (a form of epilepsy) results from infection with the worm that causes river blindness (onchocerciasis).

This worm is transmitted by a special type of black fly that is not found in Europe. How exactly the worm causes epileptic seizures is yet to be established, but it is possible that patients’ brain cells are damaged by the antibodies their bodies produce to fight the worm.

In a previous collaboration with Congolese researchers, Colebunders was also able to show that epilepsy is up to four times as prevalent in regions where river blindness remains a problem. The prevalence of epilepsy may always have been high in these regions, but this has never been investigated.

Free medication
But there is good news in the fight against nodding syndrome. “It is relatively straightforward to prevent this form of epilepsy by treating the population with ivermectin once a year in regions where river blindness occurs,” explains the Antwerp scientist. “Ivermectin has no serious side effects and is distributed extensively – and free of charge – by the pharmaceutical company Merck.

But the problem is that not everyone takes the medication, and it isn’t being distributed in all villages, for example in unstable, war-torn regions like South Sudan. Colebunders: “The regions where river blindness occurs are often very remote, and epilepsy isn’t treated in many places because medication isn’t available and because health workers haven’t been trained to administer it.”

The lack of anti-epileptic drugs means children experience repeated epileptic seizures, which cause serious brain damage and lead to mental and psychiatric disorders. In these regions, there are often multiple children with the condition in one family. In Mvolo, a village in South Sudan, one in six children has epilepsy and 50% of families have at least one epileptic child. The disease has enormous psychosocial and economic consequences for the families and villages in which it occurs.

Launch a campaign
Colebunders: “There is still no cure for nodding syndrome, but if it is diagnosed in time, the seizures can be prevented by treating the worm infection and administering anti-epileptic drugs. This way, we can halt disease progression and premature death.”

The disease can therefore be prevented and treated with relatively limited means, provided that action is taken in time. Colebunders obtained an important research grant from the European Commission in 2015 to identify the cause of nodding syndrome and find a way to prevent the disease. He is now hoping to work with other organisations to launch epilepsy prevention and treatment campaigns in regions where river blindness persists.