![Sample our Area Studies journals, sign in here to start your access, latest two full volumes FREE to you for 14 days]({"type":"image" , "src" : "/sda/5922/TOC-Subject-Sample-2021-Area-Studies.jpg"})
ABSTRACT
This article pays attention to the poorly understood nodding syndrome (NS) and its political connotations, while exploring a case of mortality in northern Uganda. The appearance of a novel set of symptoms combined with heated debates in national media and parliament, resulted in the creation of a parallel healthcare system for children afflicted by NS. This article increases our understanding of the role of the state in healthcare provision and the range of factors influencing the outcomes of, and perceptions of, healthcare programmes. The political constellations that arise from the emergence of NS should be seen within a historical framework of regional politics. The government is perceived as an important actor in the delivery of healthcare, but is also subjected to a lot of distrust that has built up over recent decades in northern Uganda. The response to NS raises questions on the status of Acholi as citizens of Uganda and reveals feelings of detachment from the national healthcare system. By publicly questioning the role of government, the affected families have become participants in the political arena.
Acknowledgements
Approval for the study was obtained from the Uganda National Council for Science and Technology and the Office of the President. I particularly want to thank the people in northern Uganda who participated in this study.
Disclosure statement
No potential conflict of interest was reported by the author.
Notes
1 I am using pseudonyms throughout the text.
2 See Idro et al., “Proposed Guidelines Management Nodding Syndrome,” 230.
3 Speech by VHT member during burial ceremony, Kitgum, 7/01/2014.
4 Landis, Palmer and Spencer, “Nodding Syndrome in Kitgum District,” 2.
5 Winkler et al., “The Head Nodding Syndrome”; Sejvar et al., “Clinical, Neurological, and Electrophysiological Features”; and Idro et al., “Proposed Guidelines Management Nodding Syndrome.”
6 Idro et al., “Is Nodding Syndrome an Onchocerca volvulus-induced Neuroinflammatory Disorder?”
7 CDC, “Prevalence of Nodding Syndrome.”
8 Idro et al., “Is Nodding Syndrome an Onchocerca volvulus-induced Neuroinflammatory Disorder?”
9 Kaiser et al., “Nodding Syndrome, Western Uganda, 1994”; Wamala et al., “Nodding Syndrome the Ears of the Hippo”; and Föger et al., “Nakalanga Syndrome and Its Relationship with Nodding Syndrome.”
10 World Health Organization. Multisectoral Response to Nodding Syndrome. Press release, March 2, 2012.
11 Johnson et al., “Nodding Syndrome May be an Autoimmune Reaction to the Parasitic Worm Onchocerca volvulus.”
12 Idro et al., “Patients Improve with Symptomatic Treatment.”
13 See, for instance, Parker and Allen, “Does Mass Drug Administration Really Work?” on the control of schistosomiasis and soil-transmitted helminths in Uganda.
14 Vokes and Pype, “Chronotypes of Media,” 211.
15 Vokes, “Mobile Phones, Exchange Relations, and Social Change,” 275.
16 Whyte, “Practicing Health Care in the Subjunctive mood,” 261.
17 De Bruijn and Van Dijk, “Connectivity and the Postglobal Moment.”
18 Speech by village elder during burial ceremony, Kitgum, 7/01/2014.
19 Speech by area counsellor during burial ceremony, Kitgum, 7/01/2014.
20 Interview with mother and NS-affected daughter, Kitgum, 13/01/2014.
21 Geissler, “The Archipelago of Public Health,” 232.
22 Ibid.
23 Prince, “Situating Health and the Public in Africa.”
24 Ibid., 4.
25 Whyte, “The Publics of the New Public Health,” 188.
26 Ibid., 200.
27 Prince, “Situating Health and the Public in Africa,” 1.
28 Okech, “Review of Health Care Reforms in Uganda.”
29 Ministry of Health, Human Resources for Health bi-annual Report, 38.
30 Van Bemmel, “Rise and Fall of Nodding Syndrome in Public Discourse.”
31 Ministry of Health, Response Plan for the Control of Nodding Syndrome, 4.
32 Ministry of Health, Nodding Syndrome Health Workers’ Training Manual.
33 Nduhuura, Press Statement by Minister of Health on Nodding Disease, 8/02/2012.
34 Idro et al., “Patients Improve with Symptomatic Treatment.”
35 Ministry of Health, Nodding Syndrome Under Control.
36 At least two children spent over two years at the nodding syndrome hospital ward.
37 Mighty Gang show on Mighty Fire Radio Station, 2/06/2013.
38 Interviews with MoH representatives in 2014; see also Uganda Radio Network, “Health Ministry Queries Accountability for Nodding Syndrome Funds.”
39 See also Idro et al., “Is Nodding Syndrome an Onchocerca volvulus-induced Neuroinflammatory Disorder?,” 113; NTV, “Victims Lacking Drugs and Medical Care.”; and NTV, “Nodding Syndrome Linked to River Blindness.”
40 Interviews with health workers of Kitgum hospital in 2012, 2013 and 2014.
41 Mutamba et al., “Stereotypes on Nodding Syndrome”.
42 Mighty Gang show on Mighty Fire Radio Station, 2/06/2013.
43 Interview with two male respondents, Kitgum, 6/01/2014.
44 Okony Tumangu Tim, Otto Joe goo cim ilaa waa, Kitgum, 12/02/2014.
45 Okony Tumangu Tim, Aculube ocwalo kwena, Kitgum 12/02/2014.
46 Okony Tumangu Tim, Two oneko latina, Kitgum 12/02/2014.
47 Male respondent during burial ceremony, Kitgum, 7/01/2014.
48 Female respondent during burial ceremony, Kitgum 7/01/2014.
49 De Bruijn and Van Dijk, “Connectivity and the Postglobal Moment.”
50 Parliament meeting in Parliament House, Kampala, 28/02/2012.
51 Parliament meeting in Parliament House, Kampala, 7/02/2012 (emphasis mine).
52 Weeks after this gathering, MP Anywar indeed transports a number of affected children from northern Uganda to Kampala, where they resided for several weeks to undergo biomedical examinations that are not available at their local hospital.
53 Van Bemmel, Derluyn, and Stroeken. “Nodding Syndrome or Disease?”; and Van Bemmel, “The Quest for Treatment.”
54 Van Bemmel, Derluyn, and Stroeken. “Nodding Syndrome or Disease?”
55 See Finnström, Living with bad surroundings; and Branch, “The Political Dilemmas of Global Justice.”
56 Whitmore, “Genocide or Just Another ‘Casualty of War’”.
57 Parker, Allen and Hastings in “Resisting Control of Neglected Tropical Diseases”.
58 Although nodding syndrome is predominantly linked to cen in local discourse, the vast majority of the NS affected population seek out biomedical treatment in addition to consultations with local healers. For a lengthier account of the spiritual approach to NS, see Van Bemmel, “The Quest for Treatment” and Van Bemmel and Aalten, Nodding Syndrome: An Illness in the Making.
59 Lord’s Resistance Army/Movement. The duty to foster peace making and prevent war in Central Africa. Open communication to the 67th session of the United Nations general assembly. Document dated 5/10/2012.
60 Interview male respondent, Kitgum, 26/01/2014.
61 Interview female respondent, Kampala, 22/11/2012.
62 De Jong and Reis, “Kiyang-yang, a West-African Post-war Idiom of Distress.”
63 Geissler, “A Life Science in Its African Para-State,” 1.
64 Parker and Allen, “Does Mass Drug Administration Really Work?”
65 Male respondent during burial ceremony, Kitgum, 7/01/2014.