What is Sickle Cell Disease?

Sickle cell disease (SCD), also known as sickle cell anemia, is a condition that people are born with, and it affects a protein in the blood called hemoglobin. Hemoglobin helps carry oxygen in red blood cells. Normally, red blood cells are round and flexible, which allows them to move smoothly through blood vessels. However, in SCD, the red blood cells become misshaped, often looking like a crescent or “sickle” instead of being round. This happens because of a change in a gene that affects the hemoglobin. When the red blood cells sickle, they can’t bend or move easily, and they can block the flow of blood to other parts of the body (National Heart, Lung, and Blood Institute, 2024). This can lead to pain, infections, and other serious problems. The biggest health risks of SCD happen when these sickled cells block blood flow to organs, which can lead to complications like stroke, lung problems, organ damage, disabilities, and, in severe cases, early death (American Society of Hematology).

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What Causes Sickle Cell Disease?

People with SCD get two special genes for hemoglobin—one from each parent. These genes create a type of hemoglobin called hemoglobin S, which is not normal. SCD can also happen if a child gets one sickle cell gene (hemoglobin S) from one parent and a different type of faulty hemoglobin gene, like beta thalassemia or hemoglobin C, from the other parent (National Heart, Lung, and Blood Institute, 2024).

Who is Affected by Sickle Cell Disease?

SCD is the most common inherited blood disorder in the United States, affecting an estimated 70,000 to 100,000 individuals (American Society of Hematology). While the disease can occur in people of any background, it is more prevalent among certain ethnic groups, including:
  • People of African descent, including African Americans (1 in 12 carries the sickle cell trait)
  • Hispanic Americans from Central and South America
  • Individuals of Middle Eastern, Asian, Indian, and Mediterranean descent
According to the Centers for Disease Control and Prevention (CDC, 2024):
  • More than 90% of individuals with SCD in the U.S. are non-Hispanic Black or African American.
  • An estimated 3%–9% of those affected are Hispanic or Latino.
  • Approximately 1 in 365 Black or African American babies is born with SCD.
  • Approximately 1 in 16,300 Hispanic American babies is born with SCD.
  • Around 1 in 13 Black or African American babies is born with sickle cell trait (SCT).
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FAQs

Who can participate in the Registry?
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Anyone who has been diagnosed with sickle cell disease (SCD) or carries the sickle cell trait (SCT) is eligible. Participation is open to individuals of all ages, backgrounds, and geographic locations within Florida.
Once your information is submitted, the Registry team will securely store your data. You may be contacted periodically for updates, offered participation in research studies, and receive education about new treatments, resources, and support services relevant to SCD/SCT.
The Registry follows strict data-privacy and confidentiality protocols. Your personal health information is stored securely and used only for approved purposes such as improving care, research, and policy. Individual identities are not disclosed in public findings.
By participating, you help advance medical research, improve care delivery, influence public health policy, and empower the SCD/SCT community. You’ll also gain access to the latest news, resources, and opportunities for participation in studies and clinical trials.