Are we serving children affected by leprosy well?

Children can be easy to overlook. Often, we believe their problems are not as big as that of an adult. Their voices aren't as loud. It is not common for them to be organised into collective action groups who campaign for their rights. Mostly, they are expected to do as they are told by adults. This is true for most children, but for children affected by leprosy, does this mean we are not hearing their voices and responding to their needs as much as we should?

Children affected by leprosy face long-term ill-health and stigma from a very young age. They may experience long hospital stays, surgeries, and disabilities. They will likely face discrimination and rejection from their friends, families, and schools. They are at an incredibly vulnerable moment in their lives and experiencing profoundly difficult challenges.

In this article, we spoke to people who work alongside children affected by leprosy to ask a series of questions about how we can serve children better.

Challenge 1: Other parents in the community do not want their children to be near a child affected by leprosy

Monika Biswas, TLM Bangladesh

One effective approach in Bangladesh has been to engage parents, teachers, community leaders, and health workers in awareness sessions that provide accurate information about leprosy, emphasising that it is curable and that treated individuals do not pose a risk to others. When parents hear directly from healthcare professionals and families affected by leprosy, fear is often replaced by understanding. Schools and community gatherings can create opportunities for dialogue, helping parents encourage positive interaction among children and fostering a more inclusive environment where children affected by leprosy are accepted, supported, and able to participate fully in community life.

Saratou Barage, TLM Niger

Leprosy-related stigma continues to deprive many children of their fundamental right to grow, thrive, and fully participate in their communities. Due to fear, misconceptions, or prejudice, some parents prevent their children from playing, studying, or forming friendships with a child affected by leprosy. This rejection, often experienced daily, leads to loneliness, emotional suffering, and a loss of self-confidence. Breaking down these barriers requires sustained awareness-raising efforts so that every child is accepted for who they are and not judged because of a disease that neither defines their worth nor determines their future.

Challenge 2: Children do not always engage well in leprosy treatment

Dr Joydeepa Darlong, TLM India

Hospitals treating children with leprosy should have child friendly spaces for assessments and consultations. Family support needs encouragement, parents and care givers need focused counselling. For example, it is okay for the parent to feel anxious about the child's condition, but if they express their anxiety and discuss it in front of the child, even if they use anxious body language, this can affect the child in a manner that can be detrimental. Counselling should be provided so that parents can have an attitude of hope. With positive attitudes, a child doesn't feel guilty or sad about the parents' fear.

Growing children, especially in their teens, are often rebellious, refusing to do self care, visit hospital, take medicines, or listen to advice - just like any other normal child. This should be understood, taken into account, and they should be treated like an adult. Make discussions participatory with teens. Anger outbursts, withdrawing, lack of confidence, or unwillingness should be treated with compassion. The child should be able to express themselves and not withhold their fears about the disease.

Child friendly comic strips about nerve and skin assessments with simple stories could be provided in the outpatient department, so that they are familiar with the procedures. Familiarity with their healthcare provider by meeting the same persons at each visit can also break barriers.

Challenge 3: Children who experience leprosy and stigma at a young age have a risk of suicide

Ruth Shrestha, TLM Nepal

Being diagnosed with leprosy can be difficult for children to understand, as they may have limited knowledge of the disease and its consequences. For children who have already developed visible impairments, the challenges can be even greater. They may experience stigma and discrimination from their friends, peers, and the wider community. As a result, they may feel excluded, lose confidence, and eventually withdraw from school.

Childhood is a particularly vulnerable stage of life, when children are still developing their emotional resilience and sense of identity. Experiencing an unexpected illness, along with negative attitudes and behaviours from those around them, can have a profound impact on their emotional well-being. Stigma and discrimination may leave them feeling isolated, misunderstood, and psychologically distressed. Without adequate support and understanding during these difficult times, they may begin to feel worthless and develop low self-esteem, withdraw from social interactions, and lose hope for the future. Children affected by leprosy may experience significant anxiety and depression, and in severe cases, they may be at increased risk of suicidal thoughts.

Ruth with Santosh, who was diagnosed as a boy. When he was 20, he told us, "I'm now thinking I'll be entirely dependent on others. I can do nothing. Now I'm 20. I'm deformed. I've lost both legs. I despair about my future. I hope nothing else happens, I don't want to face any more problems."

Saratou Barage, TLM Niger

From an early age, many children affected by leprosy, or those from families impacted by the disease, grow up under the burden of rejection, bullying, and exclusion from their peers. This repeated stigma leaves not only social scars but also deeply affects their mental health. It undermines their self-esteem and fosters feelings of isolation and shame. For some, this silent suffering can develop into severe psychological distress, even leading to suicidal thoughts. Faced with this often-invisible reality, it is essential to strengthen psychosocial support, promote inclusive school and community environments, and ensure that no child is deprived of hope, dignity, and future opportunities because of leprosy.

There are many reports of attempted suicide among adults who were diagnosed with leprosy in childhood and who experienced multilayered stigmatization from a very early age, demonstrating how stigmatization impacts the overall life course of children.

Report of UN Special Rapporteur on leprosy (https://docs.un.org/en/A/HRC/41/47)

Challenge 4: A child affected by leprosy is turned away from school because of their diagnosis

When discrimination hides behind paperwork, a child can lose a place at school - a story from Pune, India

Satish Sawant, Founder and President of APYSA

In Pune today, a school may never openly say, "We will not admit your child because your family lives in a leprosy-affected colony." But discrimination does not always disappear when people stop saying the words. Sometimes, it hides behind paperwork. Under India's Right to Education (RTE) Act, eligible children from weaker sections and disadvantaged groups can access at least 25% of entry-level seats in specified and unaided private schools, with free elementary education. In Maharashtra, these seats are allotted through an online lottery, and in the first round priority is given to children living within one kilometre of the school.

When APYSA (an Organisation of Persons Affected by Leprosy in Pune) first began filling RTE forms for families in our colony, almost every child got a seat. Over the years, one or two children began to miss out, and we accepted that as the nature of a lottery. But in recent years, there have been times when not a single child from the colony was selected, even for a school barely 200 metres from our homes, while children living a kilometre or more away were admitted. We cannot say this is discrimination. It may be the lottery, or an error in how locations are mapped. But we cannot explain it, and neither can the parents. When every child from one address is turned away, parents are left with one painful question: is it because we live in a leprosy colony? A system that decides a child's future must be transparent enough to answer that question (continued on the next page)

Even when a child is selected, the difficulties continue. A discrepancy in a name on an Aadhaar (national ID) card becomes a serious obstacle. A document must be corrected. A mother is asked to return next week, and then again. In some cases, admission does not proceed. For families already living with the burden of stigma, every additional visit brings anxiety and the fear that their child may lose an opportunity.

Even after admission, in schools where other families pay Rs 1 lakh to Rs 2 lakh a year (roughly US$1,150 to US$2,300), some families we work with have been asked for Rs 10,000 or Rs 20,000 (roughly US$115 to US$230) in additional payments. For a father who drives an auto-rickshaw or a mother caring for a parent with disabilities, that money can represent months of savings.

Many parents do not know how to challenge such demands or fear the consequences of complaining. Some borrow money; others risk withdrawing their children from school. Imagine a mother who had little opportunity to study herself, watching the same door begin to close on her child, not because of anything the child has done, but because the family carries a history of leprosy.

At APYSA, we help families prepare documents, accompany them through admission procedures, explain their rights and approach the relevant education authorities when problems arise. A school can turn away a frightened parent standing alone. It is much harder to turn away a parent who arrives with an organisation keeping a record.

Stigma has learned to hide behind paperwork, so we have learned to follow the paperwork. We urge schools to process eligible applications fairly, provide written reasons for adverse decisions, and comply with the law on fees. Education authorities must make lottery and allotment results transparent, so that every family can see why their child was or was not selected. They must also investigate complaints promptly and make grievance procedures accessible to families who may be afraid to speak up.

No child's future should depend on whether a frightened parent has the knowledge, money or courage to challenge a school.

Dinesh Basnet, President of IDEA Nepal

In Nepal, there is a low level of social awareness. Even the teachers who have a lot of influence in society, also lack knowledge about leprosy and its causes and consequences. Sometimes, activists or NGOs want data about leprosy prevalence and publicly disclose the child is experiencing leprosy or lived experience, which may lead to discrimination and leaving school. A child should never be forced to disclose their diagnosis publicly to receive support. In principle, schools should be safe and inclusive environments where every child can learn without fear of discrimination, but the reality is quite the opposite.

An awareness-raising activity such as a street drama, or something similar among teachers, school management committees, parents, and students can be done with a clear anti-discrimination message. Health professionals and organisations working in leprosy can support schools by providing accurate information about leprosy, including the fact that it is curable and that it is not easily transmitted through ordinary social contact. Where a child faces discrimination, confidential counselling, engagement with school authorities, and support from government and NGOs can help to ensure the child's right to education is protected.

Dinesh Basnet representing IDEA Nepal at the UN in New York

Challenge 5: the specific challenges faced by girls affected by leprosy

A daughter can do everything right and still be punished for her parents' past

Satish Sawant, Founder and President of APYSA

I grew up in a leprosy colony, and I write from what I have witnessed in my own community. Many of our parents were affected by leprosy in the 1970s and 1980s. Rejected by their own families, they built new lives in colonies because they had nowhere else to go. They did not choose the circumstances that brought them there. But their children were born there, and the address became our inheritance.

In Maharashtra, I have seen girls from these communities work hard for their education, studying in small rooms while often helping care for parents with disabilities. Many have graduated, some have postgraduate qualifications, and some have secured good jobs. They have done everything society asks of them. Yet, when marriage discussions begin, their achievements can count for less than their parents' history.

A proposal progresses, families speak, and then, when the other family learns about the parents' experience of leprosy, the conversation ends. Some young women face pressure to accept marriages that do not reflect their aspirations. I have also seen marriages end within one or two months after the husband's family learned about the woman's family history. Women in our community, past thirty and even thirty-five, remain unmarried despite their education and achievements, carrying the burden of a disease they never had. Young men face their own forms of rejection and exclusion. India's Personal Laws (Amendment) Act, 2019 removed leprosy as a ground for divorce under several personal-law statutes. Yet changing the law cannot, by itself, change hearts.

What would help? Section 34 of the Rights of Persons with Disabilities Act, 2016 provides for reservation in government employment for eligible persons with benchmark disabilities, including persons cured of leprosy. But this provision cannot undo the education and working years lost by earlier generations, many of whom are now in their sixties and seventies and past recruitment age limits. Their children and grandchildren continue to experience the stigma, yet do not qualify for disability-based reservation themselves. The support stops exactly where the stigma continues (continued on the next page).

Satish's answer continued

We therefore urge governments and donors to expand targeted scholarships, hostel facilities, skills training, career guidance and employment pathways for the children and grandchildren of persons affected by leprosy. We also call on policymakers to examine, with affected communities and legal experts, whether additional measures are needed to address intergenerational discrimination in education and public employment. Every young person deserves the freedom to choose their future, build a secure livelihood and live wherever they wish, without being judged by their parents' medical history. A daughter should never be turned away at the wedding door because of a disease she never had.

Monika Biswas, TLM Bangladesh

A promising solution is to combine early treatment with educational support, family counselling, and skills-development opportunities for girls affected by leprosy. In Bangladesh, girls who receive encouragement to remain in school and participate in vocational or leadership activities often gain greater confidence and independence, despite societal pressures related to marriage and caregiving roles. Working closely with families and communities to challenge stigma and promote gender equality helps ensure that girls are valued for their abilities rather than judged by their diagnosis, enabling them to pursue their aspirations and contribute meaningfully to society.

Ruth Shrestha, TLM Nepal

We can make a big difference by supporting girls with opportunities. Helping them to pursue higher education, supporting their career pathways, market-oriented skills training, and disability prevention can all support girls to become self-reliant and financially independent.

We can also establish peer-to-peer mentoring and leadership development programmes that help girls confidently express their opinions, voice disagreement, make decisions, and establish personal boundaries during family and community gatherings.

Challenge 6: The voices of children are hard to hear in our programming and advocacy

Dinesh Basnet, President of IDEA Nepal

In Nepal, children are seen as not being competent enough to give any suggestions or ideas and so they are undermined. Children affected by leprosy should be recognised not only as beneficiaries of services but also as active participants in decisions that affect their lives.

Organisations can establish child-friendly consultation sessions, peer-support groups, and safe spaces where children can express their experiences and priorities without fear of stigma or unwanted disclosure. These approaches should be age-appropriate, gender-sensitive, and designed to protect confidentiality. This could include hearing from people who were diagnosed with leprosy in their school age, so they can share their experiences, how they felt and dealt with the situation.

Involving children in this way can help organisations to develop responses that reflect their real needs, dignity, and aspirations.

To be noted: Hearing the voices of children is something that should be done with care, good safeguarding practice, and through trusted figures. As well as this, many OPL networks do not include members who are children. For these reasons, we were not able to reach out to any children affected by leprosy for this article, choosing instead to hear from the adults who are trusted by children and can share their own experiences. However, we encourage teams on the ground who are in a position to do so, to take the advice shared by Dinesh on this page.

What further study is needed to best support children?

Suggestions from Dr Joydeepa Darlong, TLM India

Research studies on children with leprosy are mostly retrospective and review articles. Prospective studies on children are very few, and there is much less evidence on disease outcomes in children.

We should consider studying:

Functional Psychosocial Outcomes
Stigma events among children
Interventions designed for parents and caregivers to address stigma and discrimination

Beyond this, national and global protocols of leprosy do not focus on children and all management is a byproduct of adult management in truncated doses and regimes. Child-friendly regimens if leprosy medication is needed with shorter and palatable drugs.

Listen as Dr Joydeepa explains some of the challenges children face with leprosy medication