By Steven Enatu
Soroti Regional Referral Hospital marked World Sickle Cell Day on Wednesday with a mix of hope, resilience, and pressing calls for greater support for patients living with the inherited blood disorder.
While Uganda’s national event took place in Lira, Soroti held its own commemoration attended by medical staff, patients, caregivers, and well-wishers. The hospital currently manages over 1,300 sickle cell patients — among the highest caseloads in Eastern Uganda.
“We have quite a number of registered sicklers, and that’s a big number for this institution,” said Dr Benedicto Watmon, the hospital director. “Ideally, we should have a dedicated clinic and ward, but due to infrastructure limitations, we manage them in the general pediatric wards.”
Malaria remains the leading cause of hospitalization among sickle cell patients, often complicated by severe anemia and chronic blood shortages.
“Many of them need blood, and when there’s none, it becomes a disaster. That’s one of the leading causes of death among these children,” Dr Watmon said. He expressed hope that the upcoming commissioning of a regional blood bank would ease these challenges.
Beyond the physical toll, Dr Watmon highlighted the emotional strain on families, who often face stigma, psychosocial hardship, and even abandonment. “Some families are broken because of this problem. Either the man runs away, or the woman does. Usually, blame is placed on one person, yet both are carriers,” he said.
He emphasized the importance of community support and pre-marital screening, noting that most carriers show no symptoms but risk passing the condition to their children. “If two carriers marry, there’s a high chance one child will be sickler, two will be carriers, and one will be normal. That’s why screening is important,” he said.
In Uganda, 13.3% of the population carries the sickle cell gene, with districts like Lira, Gulu, and Soroti reporting some of the highest prevalence. Each year, over 20,000 children are born with the disease, many without early diagnosis.
At the Soroti event, Dr Annet Katusiime, acting head of the Pediatrics Department, praised patients’ resilience. “We are celebrating our champions — the warriors with sickle cell. This is more than a medical condition; it’s a lifelong reality of pain, hospital visits, and perseverance.”
The hospital unveiled a new 50-seater tent purchased with community donations to serve as a waiting area for patients attending the weekly clinic. “Before this, patients sat on the veranda — under rain or harsh sun. Now they have some comfort and dignity,” said Dr Katusiime.
She noted growing community acceptance, with patients now traveling from distant areas and relying less on traditional healers. “Today we had a former patient — now a doctor — who shared his story. That gives us hope that with proper care, these children can grow up and achieve great things.”
Though the hospital offers basic sickle cell screening, confirmatory tests are still sent to Kampala, with results taking up to two weeks. Despite limited resources, both Dr Watmon and Dr Katusiime expressed gratitude for the Ministry of Health’s efforts to maintain supplies of hydroxyurea, a key drug in managing sickle cell complications.
“Blood shortages remain our biggest challenge. When we don’t have blood, the outcomes are bad. But our staff is trained, and we’re doing the best we can,” said Dr Katusiime.
Her final appeal was a call for dignity and inclusion: “Take these children to school, support them, be with them. These children can become the great presidents of tomorrow.”
