Nodding syndrome or disease? On the conceptualization of an illness-in-the-making

Bemmel, Karin van; Derluyn, Ilse; Stroeken, Koenraad

doi:10.1080/13557858.2013.780233

Cited by 27 publications

(31 citation statements)

References 21 publications

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“…However, the overall constellation of the patient's history, symptoms and signs appears typical of NS to such an extent that we consider this report as strong evidence that NS effectively existed in Kabende parish in 1994. This area in the Kabarole District of western Uganda has no contiguity with the known areas of NS, in particular with the focus in northern Uganda, [5][6][7][8] which is located several 100 km away (Figure 1). Kabende parish would thus be the fourth location where NS has been confirmed.…”

Section: Discussionmentioning

confidence: 99%

“…1 On the basis of comprehensive clinical, electroencephalographic and brain imaging investigations this condition was summarized as a distinct epileptic syndrome in 2005. 2 During the past decade, increasing numbers of patients affected with the nodding syndrome (NS) were also reported from South Sudan 3,4 and northern Uganda [5][6][7][8] ( Figure 1). It is accepted that patients with head nodding seizures combined with a number of other characteristic symptoms living in these three areas are affected by the same disease, NS.…”

Section: Introductionmentioning

confidence: 99%

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Nodding Syndrome, Western Uganda, 1994

Kaiser¹,

Rubaale²,

Tukesiga³

et al. 2015

The American Society of Tropical Medicine and Hygiene

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Abstract. Nodding syndrome (NS) is a poorly understood condition, which was delineated in 2008 as a new epilepsy syndrome. So far, confirmed cases of NS have been observed in three circumscribed African areas: southern Tanzania, southern Sudan, and northern Uganda. Case-control studies have provided evidence of an association between NS and infection with Onchocerca volvulus, but the causation of NS is still not fully clarified. We report a case of a 15-year old boy with head nodding seizures and other characteristic features of NS from an onchocerciasis endemic area in western Uganda, with no contiguity to the hitherto known areas. We suggest that the existence of NS should be systematically investigated in other areas.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Nodding Syndrome, Western Uganda, 1994

Kaiser¹,

Rubaale²,

Tukesiga³

et al. 2015

The American Society of Tropical Medicine and Hygiene

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“…; van Bemmel et al . ). The prevalence of NS is low, stable and endemic by contrast in Tanzania (Winkler et al .…”

Section: Introductionmentioning

confidence: 97%

Nodding syndrome since 2012: recent progress, challenges and recommendations for future research

Colebunders

Post

O‘Neill

et al. 2014

Tropical Med Int Health

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We aim to review the current epidemiology of nodding syndrome (NS) and discuss relevant gaps in research. NS and convulsive epilepsy of unknown aetiology are clustered within the same villages and families in onchocerciasis-endemic areas. They are therefore potentially different clinical expressions of the same disease. It has been difficult to perform full autopsies on NS patients who die in remote villages. Adequate fixation of tissue immediately after death is critical for the examination of brain tissue. Therefore, post-mortem transsphenoidal brain biopsies, performed immediately after death by trained nurses, will provide the best option for obtaining tissue for analysis. We suspect that certain blackflies in onchocerciasis-endemic areas may transmit a novel pathogen that could cause NS and epilepsy. This is supported by a recent drop in the number of new NS cases coinciding with vector control activities aimed at reducing blackfly populations in northern Uganda. We propose that metagenomic studies of human samples, blackflies and microfilariae are conducted to screen for pathogens, and that a clinical trial is planned to evaluate the impact of larviciding against NS and epilepsy epidemics.

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“…Over the first decade of the millennium, large numbers of patients with a previously unknown condition comprising head nodding seizures were reported from areas in South Sudan 7,8 and northern Uganda. [9][10][11] When patients from these areas were studied in more detail and the result of these investigations were compared with the findings of patients with head nodding from Tanzania, it was concluded that the patients of all these three areas were affected by the same disease, then designated as "head nodding syndrome (NS)" 12 or "Nodding syndrome." 13 A widely accepted definition of NS was drawn up in an international conference in Kampala, Uganda, 2012.…”

Section: Introductionmentioning

confidence: 99%

Onchocerciasis-Associated Epilepsy with Head Nodding Seizures—Nodding Syndrome: A Case Series of 15 Patients from Western Uganda, 1994

Kaiser

Asaba

Rubaale

et al. 2018

The American Journal of Tropical Medicine and Hygiene

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Nodding syndrome (NS) is an encephalopathy characterized by the core symptom of epileptic head nodding seizures, affecting children at the age between 3 and 18 years in distinct areas of tropical Africa. A consistent correlation with onchocerciasis was found, but so far, the causation of NS has not been fully clarified. With a systematic analysis of features of a cohort of epilepsy patients examined in the Itwara onchocerciasis focus of western Uganda in 1994, we provide evidence that NS actually occurred in this area at this time, and we demonstrate a correlation between prevalence of NS and that of onchocerciasis in different villages. Following the elimination of onchocerciasis by community-directed treatment with ivermectin and ground larviciding, our data provide a baseline to examine the question whether NS will disappear once its putative cause has been removed.

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Nodding syndrome or disease? On the conceptualization of an illness-in-the-making

Abstract: By only looking at the biomedical significance of this new syndrome, we will miss important aspects of how this illness is being experienced and understood. In our future dealings with NS, we will have to consider and re-conceive the relation between culture and neurobiology.

Cited by 27 publications

References 21 publications

Nodding Syndrome, Western Uganda, 1994

Nodding Syndrome, Western Uganda, 1994

Nodding syndrome since 2012: recent progress, challenges and recommendations for future research

Onchocerciasis-Associated Epilepsy with Head Nodding Seizures—Nodding Syndrome: A Case Series of 15 Patients from Western Uganda, 1994

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