How social shame is complicating Uganda’s battle against sickle cell

Health experts have raised concern over the persistent stigma surrounding sickle cell disease in Uganda, revealing that some parents abandon families, hide affected children, or turn to harmful misconceptions instead of seeking medical care.

The concerns were raised on Friday, June 19, during the launch of the Rooted Life Foundation in Rubaga Division, Kampala, coinciding with World Sickle Cell Day.

The foundation, founded by former Mityana Woman MP Ms Joyce Bagala, seeks to promote awareness, screening, advocacy, and support for individuals and families affected by sickle cell disease.

Speaking at the event, Dr Henry Ddungu, a consultant haematologist and oncologist at the Uganda Cancer Institute (UCI), said stigma remains one of the biggest barriers to effective prevention and treatment, despite growing medical knowledge about the disease.

“Families hide their children or conceal a diagnosis for fear of being shunned by society,” Dr Ddungu said. “The visible and debilitating nature of the disease often leads to negative perceptions, affecting patients’ mental health, social integration, and even employment opportunities.”

He cited cases where patients had lost jobs because of frequent hospital visits, and others whose parents rejected prescribed treatment due to misconceptions.

“I have seen families refuse medicines such as hydroxyurea because of fear and misinformation. Some even claim their children are allergic to it without trying it. Yet when they eventually accept treatment, many return and say it has worked,” he said.

Dr Ddungu noted that sickle cell disease is a genetic disorder affecting haemoglobin, the protein in red blood cells responsible for carrying oxygen throughout the body. The disease causes red blood cells to become rigid and crescent-shaped, restricting blood flow and leading to severe pain, recurrent infections, and progressive organ damage.

Globally, sickle cell disease affects an estimated 7.7 million people, a figure that has increased by more than 40 percent since 2000. The condition is estimated to cause over 375,000 deaths annually.

Sub-Saharan Africa bears the greatest burden.

“More than 500,000 babies are born with sickle cell disease in Africa every year, and between 50 and 90 percent of them die before reaching adulthood,” he said.

Uganda remains one of the countries most affected by the condition. According to findings from the Uganda Sickle Cell Surveillance Study, the prevalence of the sickle cell trait stands at 13.3 percent, while the disease prevalence is about 1.3 percent.

“In northern Uganda, one in every five people carries the sickle cell gene,” Dr Ddungu said. “Every year, up to 20,000 babies are born with sickle cell anaemia in Uganda, and between 30 and 40 percent die before their fifth birthday. It remains one of the leading causes of admission in paediatric wards.”

He attributed the continued burden to inadequate public awareness, limited healthcare infrastructure, shortages of specialised health workers, and widespread stigma.

Dr Emmanuel Ssekasanvu, a consultant physician and nephrologist, said cultural beliefs and misconceptions continue to fuel discrimination against affected families.

“Previously, many communities associated such illnesses with witchcraft or misfortune,” he said. “When children died, families rarely investigated the actual cause. Instead, they blamed curses or bad luck.”

According to Dr Ssekasanvu, women often bear the heaviest burden when a child is born with sickle cell disease.

“The tendency in some families is for men to flee when a woman gives birth to children with a genetic condition. The woman cannot run away from her children, so she carries the responsibility alone,” he said.

He added that many mothers and their relatives are unfairly blamed for bringing “misfortune” into families, despite the fact that sickle cell disease is inherited from both parents.

“Sickle cell is a genetic disease. Somewhere in the family line, there is a carrier. A child develops sickle cell disease when one carrier parent has a child with another carrier parent,” he explained.

The experts emphasised the importance of genotype screening before marriage and childbearing as one of the most effective prevention measures.

The Ministry of Health also acknowledged the urgent need for stronger awareness campaigns, particularly among young people.

Mr Richard Kabanda, the Commissioner for Health Promotion, Education and Strategic Communication at the Ministry of Health and chief guest at the event, said Uganda’s youthful population should be at the centre of prevention efforts.

“We need to rethink how we create awareness about sickle cell disease,” he said. “About 70 percent of Uganda’s population is below 25 years. These are the young people we should be targeting because they are making decisions that will shape future families.”

Mr Kabanda noted that awareness gaps, inadequate health infrastructure, and a shortage of specialists continue to hamper efforts to tackle the disease.

“We still do not have enough specialists, nurses, and doctors trained in sickle cell management. Government alone cannot champion every aspect of prevention. We need non-health actors and community organisations to join the effort,” he said.

For Ms Bagala, the launch of the Rooted Life Foundation was inspired by personal experience after sickle cell disease affected her family.

“When sickle cell disease entered my family’s life, it brought challenges that no parent can ever fully prepare for,” she said. “It taught us about vulnerability, courage, and resilience. But perhaps the most painful lesson was realising how little many people know about this disease.”

She said widespread ignorance continues to expose families to stigma and isolation, prompting her to establish the foundation.

“Our roots are advocacy and hope,” she said. “We are committed to raising awareness, promoting screening, supporting affected families, and advocating for improved healthcare outcomes.”

Ms Bagala said the foundation envisions a future where every parent understands the importance of knowing their genotype, every child receives timely care and support, and no family faces the journey alone.

Dr Ddungu welcomed the establishment of the foundation, describing it as a timely intervention in the fight against sickle cell disease.

He also highlighted the Ministry of Health’s nationwide mandatory newborn screening programme, which aims to ensure early diagnosis and treatment for affected children.

“Combined with awareness, access to treatment, and community support, we can significantly reduce the suffering and deaths caused by sickle cell disease in Uganda,” he said.