Low public awareness, reluctance to undergo screening and a shortage of specialized health workers remain some of the biggest obstacles to the prevention and treatment of sickle cell disease in Uganda, health experts have said.
The concerns were raised as Uganda joined the rest of the world to commemorate World Sickle Cell Day during an event that also marked the launch of Rooted Life Foundation, a non-profit organization dedicated to supporting people living with sickle cell disease and raising public awareness about the condition.
For 74-year-old Abdul Mukiibi, the journey of raising his eldest son, Jamal Katende, who lives with sickle cell disease, has been marked by years of uncertainty, financial strain and emotional hardship.
Mukiibi said he only discovered that his son had sickle cell disease when the child was two years old after repeated illnesses and numerous visits to health facilities.
“We moved from one health facility to another searching for treatment, specialists and medicine. It was a very difficult journey because we did not know what was causing our son's illness,” Mukiibi said.
The Founder of Rooted Life Foundation, Joyce Baagala Ntwatwa, said her personal experience of raising a child with sickle cell disease inspired her to establish the organization to support affected families and educate the public.
She noted that while patients endure recurring pain and health complications, caregivers also face enormous emotional and financial burdens.
According to Baagala, some mothers are abandoned by their partners after giving birth to children diagnosed with the condition.
Baagala urged the government to increase the availability of medicines, expand treatment centres and intensify nationwide awareness campaigns to dispel myths that continue to associate sickle cell disease with witchcraft.
Speaking at the launch, the Commissioner for Health Promotion, Education and Strategic Communication at the Ministry of Health, Dr Richard Kabanda, said the government plans to expand sickle cell treatment centres across the country and train more specialists over the next five years.
“Working together with organizations such as Rooted Life Foundation will help us increase public awareness and bring quality sickle cell services closer to communities across the country,” Dr. Kabanda said.
According to Dr. Kabanda, Uganda has one of the highest burdens of sickle cell disease globally, with an estimated six million people living with the condition.
He said the highest prevalence is found in the Northern, Central and Eastern regions, emphasizing that increased screening, public education and early diagnosis are critical to reducing new cases and improving the quality of life of those affected.
Health experts say overcoming stigma, expanding access to screening services and strengthening specialized care will be essential if Uganda is to reduce the burden of sickle cell disease and improve outcomes for patients and their families.