World Sickle Cell Day, observed annually on June 19th, is an international awareness day dedicated to raising global consciousness about sickle cell disease (SCD)—a serious inherited blood disorder. The day serves to educate the public, promote early diagnosis and treatment, and offer support to individuals and families affected by the condition.
Sickle Cell Disease is a global health issue, impacting millions of people worldwide. It is estimated that over 300 million people carry the sickle cell trait (AS)—the benign carrier condition. Each year, more than 500,000 infants are born with major haemoglobin disorders globally, with over 400,000 of those in Africa. In Ghana alone, approximately 15,000 babies are born with SCD every year.
One of them is 39-year-old Lovia Amoateng, a single mother and a final-year student at the University of Media, Arts and Communications. Born with sickle cell disease, Lovia has faced immense challenges since childhood, but through resilience and determination, she continues to push forward as a mother of two.
“Growing up as a sickle cell patient from childhood hasn’t been easy. I started having crisis when I was in primary two, after the death of my father. My father was an SS genotype, and I together with my other two siblings are SC. But among us, I was the one having a lot of crises—within a month, I go on admissions at least three at the Komfo Anokye Teaching Hospital,” she recounted.
This year’s global theme—“Global Action, Local Impact: Empowering Communities for Effective Self-Advocacy”—highlights the importance of grassroots efforts in improving care, support, and awareness for individuals living with SCD. It calls for global commitment while empowering local communities to take charge of their health and advocate for better care systems.
According to Dr. Diana Dwuma Badu, a Clinical Nurse Specialist in Haematology at the Department of Child Health, Korle Bu Teaching Hospital, sickle cell disease is especially prevalent in malaria-endemic regions, particularly among people of African and bloodline descent.
“When you take all the disease, 80% is sickle cell disease. Sickle cell disease is very common in malaria endemic areas and people of African and blood decent. Over 80% of persons living with sickle cell can be found in Sub-Saharan Africa. In Ghana, every two out of 100 children born every year have sickle cell, and this accounts for 15 to 18000 children born with sickle cell disease. One in every four Ghanaian is a carrier of the sickle cell trait,” she states.
Sickle Cell Disease continues to be a significant public health challenge, particularly in Sub-Saharan Africa, which bears about 75% of the global burden. Yet amidst these challenges, stories like Lovia’s offer a glimpse of strength and hope.
“I have a couple of songs I have written, sometimes I go to the beach to have time for myself. I also prioritize what I eat and take my folic acid. It is not anything I can eat, I have to be very selective with my meal. I don’t eat late, and by 5 PM I have to pause any thing and take some rest. I can say I am a bit lucky, by the grace of God, counseling from Doctors and advice from families and friends,” she added.
In a major policy shift, Ghana has integrated Hydroxyurea, a life-improving medication for SCD management, into its National Health Insurance Scheme (NHIS)—a move expected to improve outcomes for thousands of patients across the country.
Dr. Diana emphasized the importance of knowing your sickle cell status before choosing a partner, and encouraged parents with children living with SCD to seek regular hospital care to improve outcomes.
“Because sickle cell is passed on from parents to their children, it is essential that people get to know what their sickle cell status is. When a child is born today it can be checked. Then if you are found to be a carrier of sickle cell, you can be counseled on what to do so you can make an informed decision in choosing a partner. Sickle cell children are born at a result of choosing a partner who is sickle cell patient,” she advised.
The progress made so far should inspire continued commitment. Because for those living with sickle cell disease, “hope through progress” must be more than a theme—it must become a reality.
By Andy Oppong Dankyi
