Nodding Syndrome, Sexual and Reproductive Health and Rights (SRHR), and the Question of Dignity: An Africentric Reflection.
By Denis Nono
Nodding Syndrome, Sexual and Reproductive Health and Rights (SRHR), and the Question of Dignity: An Africentric Reflection.
Denis Nono, Afya na Haki.
Nodding syndrome is a severe neurological disorder affecting children in parts of sub-Saharan Africa, particularly northern Uganda, South Sudan, and Tanzania. Emerging as an epidemic in the early 2000s, it is considered a form of pediatric epilepsy characterized by repeated head-nodding seizures, often triggered by eating or cold temperatures.[1] As the disease progresses, affected children may experience additional seizures, cognitive decline, stunted growth, malnutrition, and physical disabilities, leading to significant loss of independence.1 This debilitating form of epilepsy is characterized by a unique form of seizure, such as repeated and uncontrollable head dropping forward[2]. The onset is from 5-15 years of age, and yet children grow with immense challenges, such as generalized seizures, cognitive decline, and growth faltering.2 With cognition as one of the key challenging features, death by drowning and severe burns have been imminent in times of epileptic seizures.2 Yet, to understand Nodding Syndrome only as a biomedical condition is to miss its deeper significance. The pathogenesis of nodding syndrome has long been inconclusive, and major unanswered questions remain. The features of the disease include drooling or incontinence during head-nodding episodes. This includes excitatory stimuli, such as food or cold weather, that may precipitate the head-nodding episodes, although they may also occur spontaneously.2 The disease has since occupied a troubling space in global and African health discourse. In reality, it exposes layered inequalities in health systems, knowledge production, and the realization of sexual and reproductive health and rights (SRHR). An Africentric lens shifts the conversation from symptoms to systems, from pathology to power, and from disease management to dignity. 2 Drawing on an Africentric lens, informed by principles of Ubuntu, the focus shifts toward relational understandings of health that emphasise interconnectedness, collective responsibility, and human dignity. This perspective broadens attention beyond clinical manifestations to the social, cultural, and systemic conditions that shape wellbeing and care (Abbo et al., 2019; van Bemmel, 2020; Mulumba et al., 2025).4,5,10
The Overlooked Sexual, Reproductive Health and Rights (SRHR) Dimensions.
Despite growing recognition of Nodding Syndrome in the neurological and public health fields, its intersection with Sexual, Reproductive Health and Rights (SRHR) remain largely ignored, and this omission has significant implications. Adolescents with neurological and cognitive impairments face heightened risks of sexual violence and exploitation. Evidence from affected regions indicates that children with conditions like Nodding Syndrome are more vulnerable due to stigma, social isolation, and limited protective mechanisms. This is compounded by the combination of neurological, social, economic, and structural factors that interact to increase their risk of harm.[3] As a result, care for Nodding Syndrome tends to focus narrowly on seizure management, with little attention to broader wellbeing. This gap becomes even more pronounced as affected children transition into adolescence, a life stage where SRHR needs become critical. From an Africentric perspective, this reflects a deeper issue: the systemic exclusion of certain populations from holistic health care.
Studies conducted in northern Uganda show that girls with Nodding Syndrome are particularly vulnerable due to cognitive impairments, social isolation, and stigma, which reduce their ability to protect themselves or report abuse, thus undermining their dignity. 3,4 Qualitative research further indicates that such violence is often normalised or concealed within communities, resulting in significant underreporting and limited access to justice.[4] These patterns point to a critical failure in protection systems and highlight the extent to which SRHR, particularly the right to bodily integrity, is compromised.
Closely linked to this vulnerability is the occurrence of early and unintended pregnancies among adolescents with Nodding Syndrome. Evidence from community-based and clinical studies documents cases of “child mothers,” often resulting from sexual exploitation or coercion.6 In many instances, these pregnancies occur in contexts where access to contraception, sexuality education, and maternal health services is severely limited. Emerging biomedical research also suggests that children born to mothers with Nodding Syndrome may experience poorer developmental outcomes, raising concerns about intergenerational health and well-being.[5] These findings underscore systemic gaps in reproductive health services and support systems for affected populations.
There are also significant challenges related to autonomy and reproductive decision-making. Adolescents with Nodding Syndrome are frequently excluded from making informed decisions about their sexual and reproductive lives, with caregivers or community members assuming decision-making authority. 6 While such involvement may be framed as protective, it can also lead to coercive practices, including restrictions on relationships or pressure to use contraception without fully informed consent. This reflects broader global patterns in which persons with disabilities face violations of reproductive rights, including denial of autonomy and, in some cases, forced or coerced interventions.[6] Within the context of Nodding Syndrome, these dynamics are further complicated by stigma and limited access to rights-based guidance. Stigma itself plays a central role in shaping SRHR outcomes. Individuals with Nodding Syndrome are often perceived as socially undesirable or “unfit” for relationships and marriage, particularly in the case of girls.5 At the same time, contradictory social norms may assign value to motherhood, even when pregnancies result from abuse. This creates a paradox in which affected individuals are simultaneously excluded and exploited. Misconceptions about sexuality, including beliefs about inappropriate or hypersexual behaviour, further marginalise adolescents with Nodding Syndrome and influence how communities respond to their needs.6 Such stigma limits access to SRHR services and reinforces harmful gender norms.
In addition to these direct impacts, Nodding Syndrome has significant gendered consequences through the burden of care. Caregiving responsibilities are predominantly borne by women and girls, who often sacrifice education, employment, and their own health needs to provide continuous support.[7],[8] This has indirect but profound implications for their SRHR, including reduced access to reproductive health services, increased economic dependency, and constrained autonomy. As such, Nodding Syndrome must also be understood as a gender justice issue. Another critical dimension is the systemic exclusion of SRHR from health responses to Nodding Syndrome. Most interventions focus on seizure management and nutritional support, with limited integration of psychosocial or reproductive health services.[9] This narrow approach reflects broader structural neglect, where conditions affecting marginalised populations receive fragmented and under-resourced responses. It also highlights a gap in the realisation of the right to benefit from scientific progress, as affected communities continue to experience limited access to comprehensive and context-appropriate care.
Reclaiming Dignity in Health and Rights.
An Africentric framing of Nodding Syndrome insists that health cannot be separated from dignity, nor sexual and reproductive health and rights (SRHR) from broader questions of justice. The continued marginalisation of affected populations reflects not only gaps in service delivery but also deeper structural inequities that determine whose lives are prioritised within health systems, research agendas, and policy responses. In this context, addressing Nodding Syndrome meaningfully requires more than clinical interventions; it demands confronting these inequities directly and ensuring that affected individuals are not excluded from conversations about rights, care, and scientific progress. SRHR, therefore, is not an optional or secondary concern; it is central to what it means to live with dignity.
Conclusion: Toward an Africentric SRHR Response.
Responding to the intersection of Nodding Syndrome and SRHR requires moving beyond a strictly biomedical approach toward more integrated and equitable systems of care. An Africentric SRHR approach reframes protection as a collective responsibility, rooted in community accountability and culturally grounded safeguarding practices.[10] This entails rethinking how services are delivered so that neurological care is meaningfully linked with SRHR at all levels of the health system, recognising that wellbeing cannot be compartmentalised. It also requires ensuring that adolescents with disabilities are not treated as passive recipients of care but are actively included in SRHR education, services, and decision-making processes. At the same time, strengthening protection mechanisms is critical, particularly in addressing sexual violence through approaches that are both rights-based and grounded in community accountability.
Equally important is recognizing caregiving as a central yet often invisible component of the response. Supporting caregivers, predominantly women and girls, through social protection and public policy is essential to addressing the broader gendered impacts of the condition. Finally, an Africentric response must confront the enduring imbalances in knowledge production by centring African leadership in research, policy, and practice. This is not only about representation, but about ensuring that interventions are rooted in local realities, responsive to lived experiences, and aligned with broader struggles for equity and justice.
[1] Abd-Elfarag, G.O.E., Edridge, A.W.D., Spijker, R., Sebit, M.B. and van Hensbroek, M.B., 2021. Nodding syndrome: A scoping review. Tropical Medicine and Infectious Disease, 6(4), p.211.
[2] Dowell, S.F., Sejvar, J.J., Riek, L., Vandemaele, K.A., Lamunu, M., Kuesel, A.C., Schmutzhard, E., Matuja, W., Bunga, S., Foltz, J. and Nutman, T.B., 2013. Nodding syndrome. Emerging infectious diseases, 19(9), p.1374.
[3] Spencer, P. S., et al. (2016). Nodding syndrome: 2015 International Conference Report.
[4] van Bemmel, K., 2020. Conceptualizing Illness: Nodding Syndrome in Northern Uganda. Afrika Focus, 33(1), pp.143-152.
[5] Nyakato, M., Naggayi, S.K., Akun, P.R., Ononge, S., Odong, A., Baguma, E.A., Nansiiro, H., Kalibbala, D., Ouma, S., Besigye, I. and Idro, R., 2024. Poor neurodevelopment, nutritional and physical growth outcomes among children born to mothers with nodding syndrome. Seizure: European Journal of Epilepsy.
[6] Meyers, S. and McCloskey, M., 2018. Young persons with disabilities: Global study on ending gender-based violence, and realising sexual and reproductive health and rights.
[7] Dowell SF, Sejvar JJ, Riek L, Vandemaele KA, Lamunu M, Kuesel AC, Schmutzhard E, Matuja W, Bunga S, Foltz J, Nutman TB, Winkler AS, Mbonye AK. Nodding syndrome. Emerg Infect Dis. 2013;19(9):1374-84. doi: 10.3201/eid1909.130401. PMID: 23965548; PMCID: PMC3810928.
[8] World Health Organization (WHO). (2012). Nodding syndrome: outbreak and response.
[9] Abbo, C., Mwaka, A.D., Opar, B.T. and Idro, R., 2019. Qualitative evaluation of the outcomes of care and treatment for children and adolescents with nodding syndrome and other epilepsies in Uganda. Infectious diseases of poverty, 8(1), p.30.
[10] Mulumba, M., Oga, J. and Muhumuza, N., 2025. Beyond reproductive rights: implementing the Africentric reproductive justice framework in sexual and reproductive health and rights litigations in Africa. Sexual and Reproductive Health Matters, 33(1), p.2570579.
