Sickle Cell Disease: Frequently Asked Questions
Understanding the Journey. Supporting the Community.
At the Debra Frazier Foundation 4 Hope, we believe that education is one of the most powerful tools in the fight against Sickle Cell Disease (SCD). Whether you’re newly diagnosed, supporting a loved one, or simply want to learn more, this page offers answers to some of the most common questions.
Sickle Cell Disease is a group of inherited blood disorders that affect hemoglobin, the molecule in red blood cells that carries oxygen. Instead of being round and flexible, red blood cells in someone with SCD are shaped like a sickle or crescent. These misshaped cells can block blood flow, causing severe pain and damage to organs.
SCD is a genetic condition passed from parents to children. A person must inherit the sickle cell gene from both parents to have the disease. If only one gene is inherited, the person has Sickle Cell Trait—a carrier condition that typically doesn’t cause symptoms but can be passed to children.
SCD primarily affects people of African descent, but it also occurs in Hispanic, Middle Eastern, Indian, and Mediterranean populations. In the United States, it’s estimated that about 100,000 people are living with SCD.
Common symptoms include:
- Chronic pain (often called a “crisis”)
- Fatigue or weakness
- Swelling in the hands and feet
- Frequent infections
- Delayed growth in children
- Vision problems
Currently, the only potential cure is a bone marrow or stem cell transplant, which is not an option for everyone. Most treatment focuses on managing symptoms, preventing complications, and improving quality of life.
Sickle Cell Trait (SCT) means a person carries one copy of the sickle cell gene. While they usually don’t experience symptoms, they can pass the gene to their children. In some cases, people with SCT may experience complications under extreme conditions like intense physical exertion or high altitudes.
Treatment may include:
- Pain management
- Hydration and rest
- Medications like hydroxyurea
- Blood transfusions
- Preventive care and regular checkups
Ongoing research continues to improve treatment options and outcomes.
- Get tested for Sickle Cell Trait
- Donate to support education, care, and research
- Advocate for better healthcare access and equity
- Volunteer at events and fundraisers
- Share what you’ve learned with your community