As Ghana joined the global community to observe World Sickle Cell Day, medical experts, patients, and advocates took the opportunity to highlight the daily challenges faced by individuals living with sickle cell disease (SCD). They called for increased support, public awareness, and investment in research and treatment.
During an appearance on the Asaase Breakfast Show on Thursday, June 19, Dr. Eunice Agyeman Ahmed, a haematologist at Komfo Anokye Teaching Hospital, emphasised that while sickle cell disease primarily affects people of African descent, it is not limited to this group. “People from Southeast Asia, the Middle East, and parts of the Mediterranean also experience sickle cell disease. However, about 70% of those affected are in Sub-Saharan Africa—this is our issue,” she stated.
Sickle cell disease is an inherited blood disorder that causes red blood cells to take on a rigid, crescent shape. This deformation reduces their ability to carry oxygen, often leading to severe pain, anaemia, jaundice, and recurrent infections. “Pain is the hallmark,” said Dr. Ahmed. “It often occurs in the bones and joints and can be intense enough to necessitate hospitalisation. Patients also suffer from chronic anemia, jaundice, and face a higher risk of infections and organ damage, including kidney failure, heart issues, and strokes.”
A Survivor’s Story
In the studio was Lily Darko, a 44-year-old woman living with sickle cell. She recounted a life marked by frequent crises, long hospital stays, and the loss of her twin sister to the disease at age 16. “Colibru was like home to me when I was a child,” she said. “But for the last 10 years, I’ve managed to stay out of the hospital. I’ve lived with a chronic leg ulcer—one of the complications of sickle cell—but with care and discipline, I’ve survived.” Lily urged others living with the condition to stay positive, remain disciplined with medication, drink water frequently, and avoid physically strenuous activities. “Just be happy and live as a normal human being,” she said.
Limited Access to Advanced Treatment
When asked about curative treatments, Dr Ahmed explained that while bone marrow transplants and gene therapy offer hope, they remain out of reach for most Ghanaians. “Gene therapy costs between $2.2 and $3 million. Even bone marrow transplants—though less expensive—require matching donors and are only available abroad,” he noted. He advocated the use of hydroxyurea, a disease-modifying drug available in Ghana that can significantly reduce complications when used under proper medical supervision. He also recommended folic acid, penicillin prophylaxis, regular check-ups, and lifestyle changes as key to managing the disease.
Combating Stigma and Isolation
Candace Fleischer Djoleto, a haematology nurse specialist, highlighted the social stigma faced by individuals with sickle cell, particularly in employment and relationships. “Many lose their jobs due to frequent hospitalisations. Some drop out of school. Others are mocked or excluded from relationships,” she said. “One of my patients was ready to give up on life until I introduced him to Lily. Her story changed his outlook.” Candace called on Ghanaians to support, not isolate, those living with sickle cell disease.
“These are people with dreams, talent, and potential. Let’s build an ecosystem that allows them to thrive.” With an estimated 15,000 children born with sickle cell annually in Ghana, advocates say it’s time for a national policy push—improving early diagnosis, making hydroxyurea more accessible, supporting genetic counseling, and reducing discrimination. “This disease is manageable. But for patients to thrive, they need more than medicine—they need empathy, education, and opportunity,” Candace concluded.
