In the press

Date: 15 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.

Date: 14 November 2016

Prof. Robert Colebunders attended the 65th Annual Meeting of the American Society of Tropical Medicine & Hygiene (ASTMH) in Atlanta (United States of America). The slides of his oral presentation 'High prevalence of epilepsy in onchocerciasis endemic regions in the Democratic Republic of the Congo (DRC)' are available here.
The picture below shows prof. Colebunders and Sebastian Pion at the meeting in Atlanta.

Date: 18 July 2016

Introduction: Professor Robert Colebunders (UAntwerp) discovers solution for nodding syndrome
 

Research by Prof. Robert Colebunders (University of Antwerp) has demonstrated that nodding syndrome is just one of the types of epilepsy caused by the worm that is also responsible for river blindness (onchocercose). The results indicate that treatment for river blindness can also prevent nodding syndrome from developing.  

The worm that causes river blindness is transmitted by a special type of black fly that is not found in Europe.  “It was already known that this worm could cause itching, skin lesions and blindness, but what wasn’t clear until now is that it can also lead to epilepsy. A nodding syndrome epidemic broke out in some parts of northern Uganda and South Sudan during the war. This was because people were moving closer to fast-flowing rivers in which the black fly lays its eggs. In addition, there seems to have been a weakening of resistance and a lack of treatment”, explains Prof. Colebunders. “This form of epilepsy is characterised by the fact that it usually occurs in healthy children aged between 5 and 18 in regions with river blindness”, says Prof. Colebunders.  “Often, multiple children from the same family develop epilepsy, and the disease is accompanied by intellectual disability, other neuropsychiatric disorders and growth impairments if it is not treated quickly.” 

In Uganda, the epidemic has now been halted by twice-yearly doses of an antiparasitic drug (ivermectin – a product that won its developers the Nobel prize this year).  The epidemic continues in South Sudan, however, because insecurity in the region means that the medication cannot be distributed. Prof. Colebunders’s team researched nodding syndrome in the Democratic Republic of the Congo (DR Congo) in collaboration with Congolese researchers. Their research indicates that in many parts of DR Congo, where river blindness has not yet been eradicated, epilepsy is up to four times as prevalent as in places in Africa where river blindness does not occur. “In many Congolese villages in the eastern provinces, epilepsy was observed in two to four percent of the population. Often, several children in one family have epilepsy. More than 95% of these children do not receive any treatment for their epilepsy. They often have serious intellectual disabilities because of the repeated epileptic seizures they experience”, explains Prof. Colebunders.

Prof. Colebunders’s team estimates that, in total, more than 100 000 people in Africa could have developed epilepsy as a result of infection with this worm. This form of epilepsy could have been prevented by annual treatment with ivermectin.  For several years now, ivermectin has been distributed extensively and free of charge in villages where the population is deemed to be at risk of developing river blindness because of the black fly.  “But the problem is that not everyone takes the medication, and it isn’t being distributed in all villages. First of all, we need to reinforce and expand the river blindness control programme. And secondly, we need to do much more to improve the treatment of epilepsy in these remote areas of Africa.”

Date: 25 April 2015

Prof. Colebunders gave a presentation during the European Conference on Clinical Microbiology and Infectious Diseases, Copenhagen (Denmark). The lecture was entitled 'Nodding syndrome and epilepsy in onchocerciasis endemic regions: comparing the epidemiological situation in 3 different countries'.

More information: https://www.escmid.org/.