New curative therapy brings hope for the treatment of nodding syndrome

News article 30 May 2024
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A new study suggests that a course of the drug doxycycline can decrease acute seizure-related hospitalisation and deaths related to nodding syndrome.

Nodding syndrome is a neurological condition that causes severe and debilitating mental and physical disabilities and life-threatening seizures. The disease mainly affects children and adolescents living in parts of East Africa.

Recent research into the origins of nodding syndrome linked it to infection with a parasite responsible for the disease onchocerciasis, commonly known as river blindness. 

Based on this discovery, in research funded by the UK Medical Research Council, Dr Richard Idro from Makerere University worked with colleagues in Uganda, Liverpool School of Tropical Medicine (LSTM), University of Oxford, National Institutes of Health, USA, Ministry of Health, Uganda, and the London School of Hygiene & Tropical Medicine to test whether a course of doxycycline, a drug that can cure onchocerciasis, would benefit patients suffering from nodding syndrome.

The results, published in Lancet Global Health, showed that doxycycline can be used to control infection-induced severe seizures in patients with nodding syndrome and substantially reduce antibodies to the parasite responsible for onchocerciasis.

The study’s lead author, Dr Richard Idro, said: “This study not only confirms the association between infection by the filarial worm Onchocerca volvulus but also suggests that prevention of fever-causing infections with antibiotic prophylaxis can greatly reduce hospitalisations and deaths in nodding syndrome.”

Professor Mark Taylor from LSTM co-authored the paper and pioneered doxycycline therapy to treat onchocerciasis. He said: “This study demonstrates yet another benefit of using doxycycline therapy for onchocerciasis. Although it still leaves questions on the cause of nodding syndrome, it does build on other evidence showing that treatment of onchocerciasis brings real benefits to those suffering from this condition and additional benefits by reducing hospitalisation and deaths associated with nodding syndrome.”

Professor Colebunders, an Honorary Professor at LSTM and a global expert on nodding syndrome, worked with colleagues from the University of Antwerp and experts from the onchocerciasis community to develop recommendations for health policymakers to increase the coverage of onchocerciasis treatments.

They suggested giving free access to anti-seizure medication in impoverished communities affected by onchocerciasis-associated epilepsy (OAE) and for the scientific community to intensify their efforts to identify the underlying disease mechanism to provide new approaches to their treatment and clinical management.

Professor Colebunders said: “Now that we know doxycycline can limit the seizures associated with nodding syndrome, it is essential that sufferers are given access to the drug. We must also redouble our efforts to discover what is causing this debilitating disease so we can find better treatments and, possibly, a way to prevent it entirely.”

Dr Idro's study paves the way for future research on the role of doxycycline as a treatment for nodding syndrome and prompts further investigations into its precise cause.