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GREAT REPORT
South Sudan: the ravages of the mysterious nodding syndrome
Published on :05/02/2024 - 8:00 p.m.
Listen - 7:30 p.m.
Head nodding syndrome affects children aged three and over. The disease begins with episodes of head shaking accompanied by loss of consciousness. In the absence of medical care, the symptoms worsen over the months: epileptic seizures, growth delays, mental disability... Tanzania, Cameroon, the DRC and the Central African Republic are affected.
But it is in South Sudan that the cases are most numerous, there are at least 6,000 in the Western Equatoria region.
From our correspondent,
In Mvolo, as in Mundri and in all the villages heavily affected by nodding syndrome in South Sudan, residents are being patient. Research projects have so far only provided part of the answers, failing so far to unravel the mystery of the cause of this disease. And the questions are numerous: is the disease contagious, is it transmitted from one person to another? This is a very widespread idea, which leads to the isolation of sick children, but it is false.
“ Analyses show that nodding syndrome is a form of epilepsy. And so, because it is a neurological disease, it is impossible for it to be transmitted from one person to another ,” says researcher Stephen Jada, a South Sudanese doctor who is doing his doctoral thesis on nodding syndrome while leading research carried out by the NGO Amref Health Africa on the subject.
“ The fact, observed by the populations concerned, that in the same family, or in the same village, children develop the disease one after the other, has been studied, and the theory of contagiousness has been ruled out ,” continues -he. “ What the studies have confirmed is that everyone who developed this disease was exposed to the same environmental factors. So there is something in the environment that triggers the manifestation of the disease in them ,” explains the doctor.
The predominant theory at present is that nodding syndrome is a form of epilepsy “ associated ” with onchocerciasis , “river blindness”. A parasitic disease endemic in the region, it is transmitted by the bites of black flies which breed in the tall grass along the banks of fast-flowing waterways, such as the rivers of Mundri, Mvolo and all South Sudanese villages. where cases of nodding syndrome have exploded over the past thirty years.
But even today, not all researchers agree. And other theories have been put forward: nutritional deficiencies among the affected population, the consumption of food aid contaminated by a germ, or even the use of chemical weapons in these areas which also have something in common – apart from their proximity with watercourses – to have been zones of conflict…
Indeed, in South Sudan , the Western Equatoria region was a zone of intense fighting during the second Sudanese civil war (1983-2005). Northern Uganda was also a war zone, prey to violence by the Lord's Resistance Army (LRA) in the 1990s. In both regions, cases of nodding syndrome increased during these years. conflicts marked by significant population displacements.
Unknown causes
“ These other possible causes have been analyzed, without success ,” says Doctor Gasim Abd-Elfarag, another South Sudanese specialist in nodding syndrome. “ A lot of research has gone into the cause of nodding syndrome. We looked for viruses, bacteria, parasites… All this research was carried out, without conclusive results ,” he admits. “ The exact cause of this disease remains a mystery. »
For him, as for the group of researchers gathered within the Nodding Syndrome Alliance , a consortium of NGOs and universities created in 2019, it is therefore mainly a question of conducting “ studies based on interventions, to see which work best to help these children, relieve their symptoms and support the community affected by the disease .
Antiepileptic drugs enable a considerable improvement in the quality of life of patients, and in particular encourage their return to school. And it is also about controlling onchocerciasis. Because the link between the two diseases seems difficult to deny. “ Among communities living near rivers, where onchocerciasis is very common, cases of epilepsy and nodding syndrome are more numerous ,” explains Stephen Jada. “ The further you get from the river, the fewer cases there are. And when you go to villages where there is no river, where you do not observe black fly bites, cases of nodding syndrome are rare or even absent .”
However, “ we don't know how onchocerciasis could cause this. Tests have been carried out to see if the parasites reach the brain, or if they release a toxin that causes the disease, without success. This is all still under investigation .” Despite these gray areas, eradicating the nodding syndrome remains possible for Stephen Jada. This is even its proclaimed objective.
The results of interventions carried out in Maridi in recent years give the researcher reason to remain optimistic. In this other town in Western Equatoria, which is very affected by the disease, onchocerciasis control interventions have been implemented: the cutting of grass where black flies breed, near the river, was carried out jointly with campaigns to administer deworming to the population. These efforts have borne fruit: since 2018, the number of new cases of nodding syndrome has been divided by fifteen.
By :
Florence Miettaux
https://www.rfi.fr/fr/podcasts/gran...s-du-mystérieux-syndrome-du-hochement-de-tête
