Fighting Sickle Cell
Disease in Ghana One Life at a Time.

Sickle cell disease is an inherited blood disorder caused by a mutation in the HBB gene that produces haemoglobin. Instead of round, flexible red blood cells, patients produce sickle-shaped cells that are rigid and sticky. These abnormal cells can block blood flow, causing severe pain, organ damage, stroke, and life-threatening infections. It is one of the most common inherited blood disorders in the world, with Ghana carrying one of the highest burdens.

AA — Normal haemoglobin. No sickle cell disease or trait.

AS — Sickle cell trait carrier. Generally healthy but can pass the gene to children. If two AS partners have children, there is a 25% chance each child will have SS.

SS — Sickle cell disease (the most severe form). Two copies of the sickle gene.

AC — Haemoglobin C trait carrier. Generally healthy.

SC — Sickle cell disease (SC type). One sickle gene and one C gene. Usually milder than SS but still serious.

Yes — but each pregnancy carries a 25% chance of the child having SS (sickle cell disease), a 50% chance of AS (carrier), and a 25% chance of AA (unaffected). This means that even two AS parents can have healthy children, but the risk is significant. SCDSG strongly encourages couples to know their genotypes before having children, and to seek genetic counselling to fully understand their options including prenatal diagnosis, IVF with genetic testing (PGT), and newborn screening.

Common symptoms include: severe pain episodes (called vaso-occlusive crises), anaemia (low red blood cell count), fatigue, jaundice (yellowing of eyes and skin), frequent infections, delayed growth in children, vision problems, and stroke. Symptoms vary widely — some patients have frequent severe crises while others have milder disease. Early diagnosis and preventive care dramatically improve outcomes.

Yes — bone marrow (stem cell) transplantation can cure SCD, though it requires a matched donor and carries risks. More recently, two gene therapies — Casgevy (the first CRISPR-based medicine) and Lyfgenia — were approved in the USA and UK for SCD, offering potential cures. However, these treatments remain unavailable and unaffordable in Ghana. For most Ghanaian patients, management focuses on hydroxyurea, regular blood transfusions, prophylactic penicillin, folic acid, vaccinations, and pain management.

Children with SCD have a damaged spleen, which is the body's main defence against certain bacteria — especially Streptococcus pneumoniae. Without a functioning spleen, SCD children are up to 600 times more likely to develop life-threatening pneumococcal infections. The Pneumococcal vaccine (Prevnar 13) is one of the most important preventive medicines for SCD children. Together with prophylactic penicillin, it dramatically reduces the risk of death from infection before age five. SCDSG, through our partnership with the Italian Women Association of Ghana, provides this vaccine free of charge to children who cannot afford it.

SCDSG supports patients and families through peer support groups, patient education, emergency assistance referrals, and connecting you with specialist care. To access support: contact us via WhatsApp on +233 548 372 143, email administrator@scdsg.org, or fill in the contact form on this website. Membership is also open to all — join as an Individual Member (GHS 10/month) to access the full network of support and stay connected to our community.

SCDSG periodically organises free genotype screening drives across Ghana. Follow our social media pages and newsletter to get notified of upcoming screening events near you. You can also contact us on WhatsApp (+233 548 372 143) to find out when the next screening drive is in your area. For routine testing, most teaching hospitals and polyclinics in Ghana offer haemoglobin electrophoresis — ask at your nearest health facility.