In South Sudan, the difficult fight against the mysterious “nodding syndrome”

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The first symptoms occurred one day in 2004, when Foybe was barely 5 years old. “We had just fed him when suddenly his head fell forward”, recalls his father, Justin Sabah Richard, a farmer in Maridi, a small town in the state of Western Equatoria in South Sudan. This was the start of a very long series of daily episodes characteristic of this mysterious disease, “nodding syndrome”.

Very frail, Foybe is now 22 years old but looks ten years younger, as the disease has hampered her growth. In 2006, the nodding episodes were compounded by violent convulsions. It was not until a new antiepileptic treatment, prescribed in October of this year, that the young woman finally saw her pain subside. After years of suffering and disarray, “The headaches are gone, and I can eat normally”, testifies the one who was withdrawn from school at the age of 5 years and who survived until then without effective treatment, under the constant supervision of her parents. Lucky to have survived drowning or falling into a fire, the main causes of fatal accidents for children with this incurable neurological disease, the origin of which remains to be determined.

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In 2020, the Nodding Syndrome Alliance (NSA), a consortium led by the NGO Amref in South Sudan, was behind the opening of three clinics dedicated to the treatment of nodding syndrome and epilepsy in Western Equatoria, in the towns of Mundri, Lui and Maridi. It is in a small brick building within the Maridi hospital that is the one where Foybe comes to seek his new treatment every month, like 1,200 other patients treated here, whether they are “nods of the head”, epilepsy or both, since one “Passage from one to the other is observed”, notes Jacopo Rovarini, from Amref, the project coordinator.

Neglected tropical disease

In total, 2,900 people are currently supported in the three structures, but “The number of cases in the whole country is estimated at 10,000”, he says. The objective of the project is to help patients and their families, but also to carry out research to try to discover the causes and the nature of this pathology appearing on the list of neglected tropical diseases of the World Health Organization. Because, if hypotheses exist, no scientific team has formally demonstrated the mechanism of transmission.

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In South Sudan, the difficult fight against the mysterious “nodding syndrome”