Browsing by Author "Aceng, Ruth Jane"

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Is Nodding Syndrome an Onchocerca Volvulus-Induced Neuroinflammatory Disorder? Uganda’s Story of Research in Understanding the Disease
(Elsevier, 2016-04) Idro, Richard; Opar, Bernard; Wamala, Joseph; Abbo, Catherine; Onzivua, Sylvester; Mwaka, Amos Deogratius; Kakooza-Mwesige, Angelina; Mbonye, Anthony; Aceng, Ruth Jane
Nodding syndrome is a devastating neurological disorder, mostly affecting children in eastern Africa. An estimated 10 000 children are affected. Uganda, one of the most affected countries, set out to systematically investigate the disease and develop interventions for it. On December 21, 2015, the Ministry of Health held a meeting with community leaders from the affected areas to disseminate the results of the investigations made to date. This article summarizes the presentation and shares the story of studies into this peculiar disease. It also shares the results of preliminary studies on its pathogenesis and puts into perspective an upcoming treatment intervention. Clinical and electrophysiological studies have demonstrated nodding syndrome to be a complex epilepsy disorder. A definitive aetiological agent has not been established, but in agreement with other affected countries, a consistent epidemiological association has been demonstrated with infection by Onchocerca volvulus. Preliminary studies of its pathogenesis suggest that nodding syndrome may be a neuroinflammatory disorder, possibly induced by antibodies to O. volvulus cross-reacting with neuron proteins. Histological examination of post mortem brains has shown some yet to be characterized polarizable material in the majority of specimens. Studies to confirm these observations and a clinical trial are planned for 2016.
Is the Glass Half Full or Half Empty? A Qualitative Exploration on Treatment Practices and Perceived Barriers to Biomedical Care for Patients With Nodding Syndrome in Post-Conflict Northern Uganda
(BioMed Central Ltd, 2015-08-29) Mwaka, Amos Deogratius; Okello, S. Elialilia; Abbo, Catherine; Odwong, Okot Francis; Olango, Willy; Etolu, Wilson John; Oriyabuzu, Rachel; Kitara, Lagoro David; Mutamba, Brian Byamah; Idro, Richard; Opar, Toliva Bernard; Aceng, Ruth Jane; Lukwago, Assuman; Neema, Stella
Background Nodding syndrome has increasingly become an issue of public health concern internationally. The etiology of the disorder is still unknown and there are yet no curative treatments. We explored perceptions about treatment practices and barriers to health seeking for nodding syndrome in Pader and Kitgum districts in northern Uganda in order to provide data necessary for informing policy on treatment adherence and rehabilitations. Methods We used focus group discussions and individual interviews to gain deep insights into help-seeking and treatment practices for nodding syndrome. Purposive sampling was used to identify information-rich participants that included village health teams, community members not directly affected with nodding syndrome, district leaders, healthcare professionals, and caregivers of children affected with nodding syndrome. We used qualitative content analysis to analyze data and presented findings under distinct categories and themes. Results Caregivers and communities sought care from multiple sources including biomedical facilities, traditional healers, traditional rituals from shrines, and spiritual healing. Nodding syndrome affected children reportedly have showed no enduring improvement with traditional medicines, traditional rituals, and prayers. A substantial minority of participants reported minimal improvements in symptoms of convulsions with use of western medicines. Challenges involved in health seeking included; (1) health system factors e.g. long distances to facilities, frequent unavailability of medicines, few healthcare providers, and long waiting times; (2) contextual and societal challenges e.g. lack of money for transport and medical bills, overburdening nature of the illness that does not allow time for other activities, and practical difficulties involved in transporting the physically deformed and mentally retarded children to the health facilities. Conclusions Help-seeking for nodding syndrome is pluralistic and include use of traditional and biomedical practices. Western medicines admittedly showed at least short term control on nodding syndrome symptoms, especially convulsions and led in a few cases to regain of functional abilities. However, multiple barriers hinder health seeking and interfere with adherence to biomedical treatments. Regarding cure, there are hitherto no treatments participants perceive cure nodding syndrome.
Nodding Syndrome in Ugandan Children—Clinical Features, Brain Imaging and Complications: A Case Series
(BMJ Publishing Group Ltd, 2013-04-08) Idro, Richard; Opoka, Opika Robert; Aanyu, T Hellen; Kakooza-Mwesige, Angelina; Piloya-Were, Theresa; Namusoke, Hanifa; Musoke, Bonita Sarah; Nalugya, Joyce; Bangirana, Paul; Mwaka, Amos Deogratius; White, Steven; Chong, King; Atai-Omoruto, D Anne; Mworozi, Edison; Nankunda, Jolly; Kiguli, Sarah; Aceng, Ruth Jane; Tumwine, K James
Objectives Nodding syndrome is a devastating neurological disorder of uncertain aetiology affecting children in Africa. There is no diagnostic test, and risk factors and symptoms that would allow early diagnosis are poorly documented. This study aimed to describe the clinical, electrophysiological and brain imaging (MRI) features and complications of nodding syndrome in Ugandan children. Design Case series. Participants 22 children with nodding syndrome brought to Mulago National Referral Hospital for assessment. Outcome measures Clinical features, physical and functional disabilities, EEG and brain MRI findings and a staging system with a progressive development of symptoms and complications. Results The median age of symptom onset was 6 (range 4–10) years and median duration of symptoms was 8.5 (range 2–11) years. 16 of 22 families reported multiple affected children. Physical manifestations and complications included stunting, wasting, lip changes and gross physical deformities. The bone age was delayed by 2 (range 1–6) years. There was peripheral muscle wasting and progressive generalised wasting. Four children had nodding as the only seizure type; 18 in addition had myoclonic, absence and/or generalised tonic–clonic seizures developing 1–3 years after the onset of illness. Psychiatric manifestations included wandering, aggression, depression and disordered perception. Cognitive assessment in three children demonstrated profound impairment. The EEG was abnormal in all, suggesting symptomatic generalised epilepsy in the majority. There were different degrees of cortical and cerebellar atrophy on brain MRI, but no hippocampal changes. Five stages with worsening physical, EEG and brain imaging features were identified: a prodrome, the development of head nodding and cognitive decline, other seizure types, multiple complications and severe disability. Conclusions Nodding syndrome is a neurological disorder that may be characterised as probably symptomatic generalised epilepsy. Clinical manifestations and complications develop in stages which might be useful in defining treatment and rehabilitation. Studies of risk factors, pathogenesis, management and outcome are urgently needed.