Uganda urged to confront Down syndrome stigma as cases remain hidden

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As Soroti marked the belated World Down Syndrome Day on Monday, March 23, 2026, stakeholders in the district called for urgent government action to address the deep-rooted stigma faced by children living with Down syndrome and their caregivers.

Every year on March 21, World Down Syndrome Day is observed to raise awareness about the condition, in which a child is born with an extra 21st chromosome. Despite increasing medical awareness, many families continue to suffer in silence, with cases of neglect, discrimination, and misinformation still widespread across communities.



Stigma and silence persist

Egadu John Michael, chairperson of the Soroti Disabled Persons Union (SODIPU), said cultural beliefs continue to overshadow medical facts.



According to Egadu, many people still associate the condition with superstition, making it difficult for affected families to seek support openly.

Parents who spoke to our reporter shared painful experiences of isolation and judgment, noting that raising a child with Down syndrome often comes with emotional and social challenges.

Janet Alabo, acting assistant district health officer in charge of maternal and child health in Soroti, described Down syndrome as a largely neglected condition in Uganda’s healthcare system.



Advocates demand awareness and protection

Primrose Nabukalu, executive director of Inclusion Uganda, said stigma remains one of the biggest barriers to progress.

She revealed that in extreme cases, children born with disabilities are abandoned or even secretly buried due to societal pressure.

Nabukalu emphasised that Down syndrome is a natural biological condition, not a curse or result of wrongdoing.



Understanding Down syndrome and its causes

Down syndrome, also known as Trisomy 21, occurs when a child is born with an extra copy of chromosome 21.

This additional genetic material affects physical growth, cognitive development, and learning ability.

What causes Down syndrome?

It results from a genetic variation during cell division, leading to an extra chromosome. The condition occurs randomly and is not caused by behaviour, curses, or environmental factors.

Advanced maternal age can increase the likelihood, but it can occur in any pregnancy. It is not contagious and cannot be prevented.

Health experts stress that early diagnosis, therapy, and inclusive care can significantly improve quality of life.

National outlook: Gaps in awareness and care

Across Uganda, Down syndrome remains underreported and poorly understood, with limited national data due to weak surveillance systems and stigma-driven concealment.

While Uganda is a signatory to disability rights frameworks under the United Nations, implementation of inclusive policies remains inconsistent.

Advocates note that there is no dedicated national strategy specifically addressing Down syndrome. Access to early screening and specialised care remains limited, and many children face barriers in education and social inclusion.

Organisations like Inclusion Uganda continue to push for stronger interventions, including public awareness campaigns, inclusive education systems, and targeted support for affected families.

A call to action

As Uganda joins the rest of the world in observing World Down Syndrome Day, stakeholders are urging the government, communities, and institutions to move beyond awareness and take concrete action.

They emphasise that tackling stigma, improving healthcare access, and promoting inclusion are critical steps towards ensuring that children with Down syndrome live with dignity and equal opportunity.