doi: 10.1371/journal.pntd.0007344. van der Waals FW, Goudsmit J, Gajdusek DC. All authors read and approved the final manuscript and agreed on its submission. This guideline was adopted as the standard reference for use by NS-affected countries during the first international scientific conference on NS in Kampala, Uganda in August 2012.37 The recommended treatments are based on symptoms and rehabilitation measures to ensure optimal functioning by the affected children.36 A review of over 500 patients in more than ten NS treatment health facilities in northern Uganda revealed reasonable symptoms control with use of anticonvulsants, nutritional support, psychotropic medications, and physical therapies based on this treatment guideline.34 Since the observation that seizures in NS respond appropriately to anticonvulsants and because there are no known causes to target, the objective of treatment in NS has been to relieve symptoms, offer primary and secondary prevention for disability, and rehabilitation to improve function.34,36 The current anticonvulsant of choice in treatment of NS is sodium valproate (Valparin 200mg, Torrent Pharmaceutical Ltd., Mehsana, India). Nodding syndrome is an unexplained epidemic epilepsy. Wasswa H. Ugandan authorities deal with a mysterious ailment that leaves people nodding continuously. No treatments have proven effective in reversing the course of the disorder, and cure remains a distant goal. CDC twenty four seven. Would you like email updates of new search results? [8] Sub-clinical seizures have been identified in electroencephalograms, and MRI scans have shown brain atrophy and damage to the hippocampus and glia cells. Dr Thomas Unnasch, Amos Deogratius Mwaka,1 Jerome Roy Semakula,2 Catherine Abbo,3 Richard Idro4 1Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda; 2Infectious Diseases Institute, Makerere University College of Health Sciences, Kampala, Uganda; 3Department of Psychiatry, College of Health Sciences, Makerere University, Kampala, Uganda; 4Department of Pediatrics and Child Health, College of Health Sciences, Makerere University, Kampala, Uganda Abstract: Nodding syndrome is an enigmatic neuropsychiatric and epileptiform disorder associated with psychomotor, mental, and physical growth retardation. 2008;49(9):14911503. Nodding syndrome is an unexplained neurologic condition characterized by episodes of repetitive dropping forward of the head, often accompanied by other seizure-like activity, such as convulsions or staring spells. Afr Health Sci. Specific treatments for NS are urgently needed to reverse the miserable health states of the NS-affected children. 2017;2(2):145152. 1965;41(1):5786. Careers. It is thought that the spirits attack children aged 318 years for two reasons; the child-soldiers who were forced to kill them were about that age, and second, the children in this age group who are returning home from the camps played with the unburied remains/bones of the innocently slayed persons.17,22,23 The vengeful spirits therefore target the children in this age group. 2013;17(3):e149e152. issa makumbi Sodium valproate is also active against some behavioral difficulties like aggression and impulsive behavior. Current treatments for NS include use of anticonvulsants, especially sodium valproate for seizure control, and behavioral modifications including agitation and aggression in affected children. [9], It is currently not known what causes the disease, but it is believed to be connected to infestations of the parasitic worm Onchocerca volvulus, which is prevalent in all outbreak areas,[10] and a possible explanation involves the formation of antibodies against parasite antigen that are cross-reactive to leiomodin-1 in the hippocampus. Kleinman A. In 2004, most children with nodding disease lived close to the Yei River, a hotbed for river blindness, and 93.7% of those with nodding disease were found to harbour the parasite a far higher percentage than in children without the disease.

The culture of any given society determines how they react to and cope with illnesses.14,15 Researchers have used the Kleinman illness explanatory model for understanding new illnesses and their impacts on society to investigate the perceptions and beliefs of the NS-affected communities. Winkler AS, Friedrich K, Meindl M, et al. Nodding episodes are atonic seizures.

Once an illness or any calamity of significant magnitude strikes a society, members of the given society often ask several key questions in an effort to understand the illness, possible causes, the name of the illness, how to avert the illness, the effective treatments, the impact of the illness on affected persons, and fears regarding the illness: the illness explanatory model.12,13 The illness explanatory model concept has been used by social and medical anthropologists to understand illnesses and how to respond to illnesses in ways that are acceptable and in line with the perceptions and belief systems of the affected society. Copyright 2017 Informa PLC. Proposed guidelines for the management of nodding syndrome. Please enable it to take advantage of the complete set of features! This site needs JavaScript to work properly. Epilepsia Open. As there is no known cure for the disease, treatment has been directed at symptoms, and has included the use of anticonvulsants such as sodium valproate[10] and phenobarbitol. Mwaka AD, Okello ES, Abbo C, et al. Epilepsia. It is currently restricted to small regions in South Sudan, Tanzania, and northern Uganda. sharing sensitive information, make sure youre on a federal Nodding syndrome (NS) is a neurological medical disorder with epileptiform, psychiatric, and physical manifestations. [11] O. volvulus, a nematode, is carried by the black fly and causes river blindness. 2003;2:714 and. To many commentators however, the IDP camps offered no protection to the population but was a ripe venue for torment and sexual abuse.19 The populations in the IDP camps were equally uncomfortable and suspicious of the intentions of the governments for congesting them in the camps as the rebels would raid and loot them with impunity even when in the protected IDP camps.1921 The illness now known as NS was first observed by the local communities in Kitgum in about 1997 and later in larger numbers in about 2007 when people were beginning to leave the camps. Branch A. Humanitarianism, violence, and the camp in Northern Uganda. -, Kaiser C, Benninger C, Asaba G, Mugisa C, Kabagambe G, Kipp W, et al. The investigations have made important progress. BMC Res Notes.

Is the glass half full or half empty? Image shows prominent cortical atrophy. [7] Nutritional deficiencies may also be present. The site is secure. The disease is named for the characteristic, pathological nodding seizure, which often begins when the children begin to eat, or sometimes when they feel cold. eCollection 2019 Jun.

HHS Vulnerability Disclosure, Help See this image and copyright information in PMC. eCollection 2021 Oct. Ogwang R, Ningwa A, Akun P, Bangirana P, Anguzu R, Mazumder R, Salamon N, Henning OJ, Newton CR, Abbo C, Mwaka AD, Marsh K, Idro R. Front Neurol. Knowledge of the causative agents and/or pathogenesis of NS is necessary for development of specific drug therapy that could lead to cure of NS as well as inform strategies for prevention. Studies have revealed a consistent association of the cause of NS with war, internal displacement, and food shortages among communities in Northern Uganda.1618 Majority of community members in the affected regions believe that NS resulted from some conditions related to the civil war and the internally displaced person (IDP) camps where the population in northern Uganda and South Sudan were forced to live during the insurgency as a way of protecting them from rebel brutality. 2014;27:7477.

Associations & Partners [7], US Centers for Disease Control and Prevention.

2016;11(7):e0159549. Its incidence has increased in Uganda and South Sudan over the past 10 years. Kleinman A. Concepts and a model for the comparison of medical systems as cultural systems. Sodium valproate is administered, starting with a dose of 10 mg/kg/d in two divided doses and then increasing the dose by 5 mg/kg/d until seizure control is achieved or the maximum dose of 40 mg/kg/d in children is reached.

A qualitative exploration on treatment practices and perceived barriers to biomedical care for patients with nodding syndrome in post-conflict northern Uganda. 2013;19(9):1374. 1983;2(12):2434. Soc Sci Med (1982). The above percentage of manuscripts have been rejected in the last 12 months. Magnetic resonance image of a 13-year-old boy in Uganda with nodding syndrome. The immediate cause for the nodding has been discovered to be a special seizure called an atonic seizure. doi: 10.1371/journal.pntd.0009821. World Health Organization. 2017;372:439440. 2013;13(4):986991. There is a consistent enigmatic association with onchocerciasis detected by skin snip or serologic analysis. Epidemic curve of nodding syndrome cases in Kitgum District, Uganda, by year of, Countries in the former Onchocerciasis Control Programme in western Africa in which onchocerciasis, Age distribution of patients at onset of nodding syndrome, Kitgum District, Uganda. Macrophage migration inhibitory factor in Nodding syndrome. Ndondo AP, Eley B, Wilmshurst JM, Kakooza-Mwesige A, Giannoccaro MP, Willison HJ, Cruz PMR, Heckmann JM, Bateman K, Vincent A. In some cases, even children of the traditional healers and witchdoctors became affected with NS, leading to loss of hope in the indigenous practices including cleansing rituals. Int J Infect Dis. 1978;88(2):251258. 2013;3(5). In order to provide our website visitors and registered users with a service tailored to their individual preferences we use cookies to analyse visitor traffic and personalise content.

Ugandas story of research in understanding the disease. This treatment gap is likely to severely affect effectiveness of NS treatment and control programs in these countries.3942 The ongoing clinical trial in Uganda, assessing the effectiveness of doxycycline in the treatment of NS, could elucidate the pathophysiology and revolutionize the treatment and control of NS in sub-Saharan African countries.33. eCollection 2022 Jun. Clipboard, Search History, and several other advanced features are temporarily unavailable. Privacy Policy

Nodding syndrome. There is evidence that seizures and behavioral problems including wandering and episodes of aggressions are controllable with anticonvulsants, especially sodium valproate and antipsychotics. Epilepsy Behav. The Town as Camp in Northern Uganda. 2014;21(1):3641. Associations of the disease with malnutrition and with onchocerciasis have been documented, but remain inconclusive. Idro R, Musubire KA, Byamah MB, et al. Age distribution of patients at onset of nodding syndrome, Kitgum District, Uganda. Trop Med Infect Dis. Nyungura JL, Akim T, Lako A, Gordon A, Lejeng L, William G. Investigation into the nodding syndrome in Witto Payam, Western Equatoria state, 2010. And so, if children of the healers also contract NS and relentlessly suffer from the same, then it is likely that the indigenous remedies could indeed not be of value in the management of NS.17,23, There is yet no known cure for NS, mainly because of the inadequate understanding of the pathophysiology and the actual cause of NS. 8600 Rockville Pike Afr Health Sci. Federal government websites often end in .gov or .mil. To date, patients with NS are treated symptomatically with anticonvulsants to which they show satisfactory improvement.34, The various perceptions regarding the causes of NS, including supernatural causes and deliberately sent evil spirits led some community members to seek care with traditional and spiritual healers. 2013 Feb;12(2):166-74. doi: 10.1016/S1474-4422(12)70321-6. This paper reviews some of the recent advances in researches on the etiologies, pathophysiology, and treatment of nodding syndrome. -, Aall-Jilek LM. Countries in the former Onchocerciasis Control Programme in western Africa in which onchocerciasis was eliminated as a public health problem through vector control (green); countries in the African Programme for Onchocerciasis Control in which onchocerciasis control is ongoing through annual mass treatment with ivermectin (beige); and areas in Southern Sudan, northern Uganda, and southern Tanzania in which nodding syndrome has been reported (red circles). Contact Us You can learn about what data of yours we retain, how it is processed, who it is shared with and your right to have your data deleted by reading our Privacy Policy. In the future, neurological scans may also be used in diagnosis.[17]. Saving Lives, Protecting People, Video: MSNBC: Africas Nodding Disease stumps doctors, MMWR: Nodding Syndrome South Sudan, 2011, CDCs Division of Global Disease Detection and Emergency Response, Video: CNN: Nodding Disease in East Africa, Video: Global Health Frontline News: Nodding disease baffles experts, CDC and the Global Health Security Agenda, U.S. Department of Health & Human Services.