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Frequently Asked Questions

  • SCD is caused by inheriting two abnormal hemoglobin-genes (e.g., the “S” variant) — one from each parent — that lead to production of abnormal hemoglobin which makes red blood cells sickle-shaped, rigid, and prone to blocking small blood vessels. (Cleveland Clinic)

  • SCT means a person has one copy of the mutated hemoglobin gene and one normal gene; most carriers lead normal lives and don’t have the full disease. SCD means two copies (or one copy plus another abnormal hemoglobin variant) and leads to clinical symptoms and complications. (NIH)

  • No, it does not only effect African Americans. It can affect individuals of various descents including Mediterranean, Caucasians from southern Europe, African, Middle Eastern, Hispanics and Indian (South Asian) descent as well as other ancestries. Almost 8 million globally have sickle cell disease.

  • Currently the few treatment options with curative intent are hematopoietic (bone marrow/stem cell) transplant and gene therapy in eligible patients. There are other therapies and medications that improve quality of life and reduce complications, but are not cures. But there is hope with more investment with new and emerging therapies. But there is hope with new and emerging therapies.

  • With improved medical care, life expectancy has increased significantly—from around 20 years in the 1970s to 40–60 years today. Early diagnosis, hydroxyurea use, and comprehensive care centers all improve survival and quality of life. (CDC, NHLBI)

  • 1. Donate Blood

    Many people living with SCD rely on regular blood transfusions to prevent strokes, relieve pain, and treat severe anemia.

    2. Support Research and Treatment Access

    Advocate for continued federal funding through NIH and CDC sickle cell programs.

    3. Volunteer or Donate

    Join the mission to educate, advocate, and support families affected by sickle cell disease.

    Whether you give blood, share information, or offer your time, you’re helping rewrite the future of sickle cell disease.


    Together, we bring hope, health, and healing — one action at a time.

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