Sensing Sleeping Sickness: Local Symptom-Making in South Sudan

ABSTRACT

Programs for neglected tropical diseases (NTDs) such as sleeping sickness increasingly involve patients and community workers in syndromic case detection with little exploration of patient understandings of symptoms. Drawing on concepts from sensorial anthropology, I investigate peoples’ experiences of sleeping sickness in South Sudan. People here sense the disease through discourses about four symptoms (pain, sleepiness, confusion and hunger) using biomedical and ethnophysiological concepts and sensations of risk in the post-conflict environment. When identified together, the symptoms interlock as a complete disease, prompting people to seek hospital-based care. Such local forms of sense-making enable diagnosis and help control programs function.

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FRENCH ABSTRACT

Les programmes pour les maladies tropicales négligées telles que la maladie du sommeil impliquent de plus en plus les patients et les agents communautaires dans la détection des cas syndromiques, laissant peu de place à l’exploration des syndromes par les patients. A partir de concepts issus de l’anthropologie sensorielle, je propose d’étudier les expériences de la maladie du sommeil au Soudan du Sud. Les individus perçoivent la maladie par le biais de discours articulés autour de quatre symptômes (douleur, somnolence, confusion et faim) en recourant à des concepts biomédicaux et ethnophysiques, et à des sensations de risques dans un environnement post-conflit. Lorsque ces symptômes sont identifiés ensemble, ils prennent alors la forme d’une maladie cohérente, incitant les personnes à solliciter des soins en milieu hospitalier. Ces formes locales de création de sens permettent le diagnostic et aident les programmes de contrôle à fonctionner.

KEYWORDS:

• South Sudan
• diagnosis
• neglected tropical diseases
• sensations
• sleeping sickness
• symptoms

MOTS-CLÉS:

• Soudan du Sud
• diagnostic
• maladies tropicales négligées
• sensations
• maladie du sommeil
• symptômes

Supplemental data

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Acknowledgments

I thank all study participants and my Madi and Dinka co-researchers Augustine Severino, Duku James Marino, Garang William Goch, Mangar Abraham Mayen and Sisto Aluma. I thank Elizeous Surur for his clinical and programmatic insight, and Chris Whitty, Francesco Checchi, Caroline Jones, Ann Kelly and Melissa Parker for reviewing early drafts of this article. The London School of Hygiene & Tropical Medicine’s ethical review committee and the Ministry of Health, Government (now Republic) of South Sudan approved this study. Permission to use illustrations and photography was provided by the Wellcome Trust and the individuals featured.

Notes

1. Only pseudonyms are used. Almost all quotations presented are translations from local languages.

2. Screening rates were slightly higher in women and adults.

3. Syndromic knowledge crossed not only ethnic but also international lines. For example, Rose was a South Sudanese Madi, Okot and his uncle were Lango from an area of northern Uganda where another form of sleeping sickness predominates, and Okot was also part Acholi. All three had lived and worked on both sides of the border. The discussion about Okot’s symptoms took place in a mixture of English and Acholi.

4. Screening programs use lumbar punctures to withdraw fluid for diagnostic examination, but here men refer to it as an injection (in English) and discuss fluid withdrawal as protective; both phenomena are examples of a general tendency in lay settings in Africa to conflate testing procedures with prevention and treatment. Talking or sleeping “anyhow” expresses that these are haphazard, not following a pattern or social norms.

5. These could be spirits associated with trees and animals or the spirit of someone murdered during the war and seeking vengeance. See, for example, descriptions of ceni death spirits in Madi and Acholi culture (Allen 1992).

6. The artist(s) responsible for illustrations in Figures 3 and 4 are unknown; the images are believed to have been created in the early 1800s, according to archivists at the Wellcome Trust.

Additional information

Funding

This work was supported by the Canadian Institutes for Health Research under grant number [DPH-88226]; the Sir Halley Stewart Trust, the European Research Council under grant number [295,845] and the United Kingdom’s Global Challenges Research Fund under grant number [ES/P010873/1].

Notes on contributors

Jennifer J. Palmer

Jennifer J. Palmer is assistant professor and co-leads the Health in Humanitarian Crises Center at the London School of Hygiene & Tropical Medicine. She is an Honorary Fellow in the Center for African Studies at the University of Edinburgh. In addition to ongoing work in sleeping sickness programs, her research focuses on health service provision and use in humanitarian crises.