If you remember nothing else from today, remember these five.
1. Sickle cell disease is inherited — both parents have to pass on a sickle gene. A child gets sickle cell disease (SCD) only when they inherit two sickle hemoglobin genes — one from each parent. A child who inherits just one sickle gene has sickle cell trait (SCT). If both parents have SCD or SCT, family planning conversations matter, and a genetic counselor can walk you through the math.
2. SCD is global. We tend to talk about sickle cell in the United States as a Black community condition, and the burden here is real — but SCD affects millions of people worldwide. It's most common among families whose ancestors come from sub-Saharan Africa, the Mediterranean, the Middle East, India, and parts of Central and South America. Sickle cell is a global story with a local face.
3. SCD can be cured for some patients. Bone marrow transplant has cured patients for decades, but it carries serious risks and requires a matched donor. Newer gene therapies were approved by the FDA in 2023 for patients aged 12 and up — they re-engineer the patient's own stem cells to make healthy hemoglobin. These are major breakthroughs. They're also expensive, complex, and best discussed with a SCD-specialist team to see if they're right for you.
4. Anemia is part of the picture — and it's treatable. In SCD, sickled red cells die early, so the body doesn't have enough to carry oxygen. That's anemia. It can get worse with infection or spleen problems. Blood transfusions, hydroxyurea, and newer SCD-specific medications all help manage the anemia and the broader disease.
5. People with SCD live long, full, meaningful lives. More than 95% of children born with SCD in the United States today live to adulthood. The keys are: regular check-ins with an SCD-savvy team, taking medications like hydroxyurea exactly as prescribed, preventing infections (handwashing, vaccines, prompt fever response), drinking 8–10 cups of water a day, and listening to your body.
Sickle cell is not a sentence. It's a condition you manage — and the science gets better every year.
— Dr. Rob
📄 Resource: CDC 5 Facts You Should Know About Sickle Cell Disease.