Noma Survivors Face a Hidden Crisis: Depression, Stigma and the Push to Make Mental Health Core Care

Noma is one of the most aggressive and least known diseases in global health. It is a rapidly progressing gangrenous condition, predominantly affecting young children in parts of sub-Saharan Africa, that can destroy the soft and hard tissues of the mouth and face within days. In 2023, the World Health Organization formally added noma to its list of neglected tropical diseases, an acknowledgement long sought by researchers and clinicians who have argued that a condition concentrated among the world’s poorest and most marginalized children deserved systematic attention. Yet according to a new opinion article published in PLOS Mental Health by global health researcher Anil Fastenau, that recognition, while overdue, addresses only the first of two profound neglects. The second neglect, the author argues, begins after a child survives: the psychological devastation of living with facial disfigurement, stigma and social exclusion, which health systems have largely treated as an afterthought rather than as an integral component of the disease itself.

The clinical course of noma explains why survival has historically dominated the care agenda. The disease, whose exact aetiology remains incompletely understood but is associated with severe malnutrition, poor oral hygiene, infectious diseases such as measles and profound poverty, advances through stages that can progress from gingival inflammation to extensive orofacial gangrene with alarming speed. Without prompt treatment with antibiotics, nutrition support and wound care, mortality is high. For those who survive, the consequences are lifelong: altered facial appearance, impaired ability to eat and speak, trismus that restricts jaw movement, and the need for multiple reconstructive operations spread over years. For decades, the measure of success in noma care has been survival, wound closure and surgical reconstruction. But as Fastenau emphasizes, survival is not recovery. A child who lives through noma may then face exclusion from school, ridicule and discrimination, restricted opportunities for employment and relationships, and a deeply internalized sense of shame that no operation can simply excise.

The quantitative evidence behind this argument has grown sharply in recent years, and it is difficult to dismiss. A 2026 cross-sectional study of 244 children aged 6 to 16 years with noma-related facial disfigurement, conducted at the Noma Children’s Hospital in Sokoto, Nigeria, found clinically significant depressive symptoms in 76.6 percent of participants, with girls particularly affected. The authors of that study were careful to note its limitations: it was a single specialist-centre population dealing with severe sequelae, and screening for depressive symptoms cannot be equated with a formal psychiatric diagnosis. Even so, the magnitude of the finding is striking. Research from Ethiopia has similarly documented substantial psychosocial and functional morbidity among people living with untreated noma sequelae, painting a consistent picture across endemic settings. When three out of four children screened at a specialist hospital show depressive symptoms of clinical significance, the argument that more evidence is needed before action becomes, as the PLOS Mental Health article puts it, increasingly difficult to defend.

Fastenau frames this situation as a second neglect, a concept that gives the article its analytical force. The first neglect is the familiar one: preventable and treatable disease allowed to progress because poverty, malnutrition, weak health systems and delayed access to care remain unaddressed across the regions where noma occurs. The second neglect begins after survival, when visible disfigurement, stigma, psychological distress and social exclusion are treated as secondary consequences rather than as part of the disease burden itself. This framing matters because it changes what health systems are obliged to count. If psychological suffering is an integral component of noma, then a programme that reconstructs faces while leaving depression, anxiety and internalized stigma untreated has addressed only part of the disease, and its reported outcomes systematically overstate the benefit delivered to patients.

The practical question is how mental health care could possibly be delivered in the settings where noma occurs, given that many endemic countries face severe shortages of specialized mental health professionals. Building stand-alone psychiatric services for a comparatively rare and geographically dispersed disease would be neither realistic nor sustainable, and fortunately, the article argues, it is also unnecessary. The World Health Organization’s essential care package to address mental health and stigma for persons affected by neglected tropical diseases, released in 2025 and elaborated through 2026, points in a different direction: integrate mental health care, psychosocial support and stigma reduction into existing neglected tropical disease programmes, community services and primary care. This approach is particularly relevant for diseases associated with visible differences and disability, including noma, leprosy, cutaneous leishmaniasis, Buruli ulcer and lymphatic filariasis. WHO’s integrated skin-NTD framework already provides a platform that combines case detection, disability prevention, stigma reduction, rehabilitation and person-centred care, and noma should enter these systems rather than sit beside them.

The mechanics of such integration are concrete rather than abstract. In endemic settings, frontline health workers trained to recognize early noma could also be trained to recognize psychological distress, using the same community contacts and referral chains that already exist for disease detection. Primary health care services could incorporate brief, validated mental health screening tools into routine assessment and follow-up of noma patients, creating a structured pathway from identification to support. Clear referral pathways could connect people requiring more intensive psychiatric care with whatever specialized services are available. Existing leprosy and skin-NTD programmes, which have accumulated decades of experience with peer-support groups, counselling, self-care groups and stigma-reduction interventions, could expand to include people affected by noma rather than reinventing these structures. Community health workers could extend their support to families as well as patients, because stigma, caregiving burdens and poverty rarely affect the individual alone, a lesson documented in detail in studies of Hansen’s disease-affected households in rural India.

Timing is another central element of the argument. Psychosocial support, the article contends, should begin before reconstructive surgery, continue throughout treatment and extend long afterwards. The reasoning is physiological and psychological at once: surgery can restore function and appearance, but it cannot automatically reverse years of rejection, interrupted schooling, social withdrawal or internalized shame that accumulated while the child was growing up with a visible difference. A reconstructed face does not by itself reopen a classroom or rebuild a social network. This is why the article proposes that mental health outcomes, social participation and quality of life should become legitimate indicators of successful noma rehabilitation, standing alongside surgical and clinical outcomes rather than beneath them. What gets measured, in global health as elsewhere, determines what gets funded, implemented and sustained.

Integration also demands a shift in who is seen as an expert. The article argues that people affected by noma must move beyond being recipients of services and become participants in designing programmes, training health workers, delivering community education, leading stigma reduction, providing peer support and shaping research. Experiences from Nigeria and Burkina Faso demonstrate that noma prevention, early detection and care can build on existing primary health care and community platforms rather than creating parallel disease-specific systems, and survivor involvement strengthens these efforts. The case is not merely ethical. People with lived experience understand dimensions of stigma, concealment, health-seeking behaviour and social reintegration that health professionals may never observe from the clinic. Their participation can make services more acceptable to the communities they are meant to reach, and it can expose outcomes that conventional clinical indicators systematically miss, such as whether a child has actually returned to school or resumed friendships after discharge.

Research priorities, the article argues, must change accordingly. What is needed are longitudinal studies that assess depression, anxiety, stigma, social participation, education and quality of life, as well as family wellbeing, before and after medical and surgical interventions, so that the psychological trajectory of recovery can be mapped and interventions evaluated against it. Yet Fastenau is explicit that the absence of perfect evidence must not become an excuse for inaction. The available data already establish that psychosocial morbidity is substantial, and WHO now provides an implementation framework for integrated neglected tropical disease mental health care that countries can adapt. The recognition of noma as a neglected tropical disease created a rare policy window to redefine what successful noma control means. Preventing disease and ensuring early treatment remain paramount, and reconstructive surgery will remain indispensable for many survivors. But the endpoint cannot simply be a closed wound or a reconstructed face. A health system, the article concludes, should not claim to have treated noma until it has also addressed the person’s opportunity to live, learn, participate and belong. Mental health and psychosocial support are not optional additions to noma care. They are noma care.

Subject of Research: Integration of mental health and psychosocial support into care for people affected by noma, a neglected tropical disease causing facial disfigurement

Article Title: Saving faces is not enough: Mental health must become core noma care

Article References: Fastenau, A. (2026). Saving faces is not enough: Mental health must become core noma care. PLOS Mental Health, 3(9), e0000723. https://doi.org/10.1371/journal.pmen.0000723

Image Credits: AI Generated

DOI: 10.1371/journal.pmen.0000723

Keywords: noma, neglected tropical diseases, mental health, depression, stigma, facial disfigurement, reconstructive surgery, WHO, Nigeria, psychosocial support, global health, child health