Frequently Asked Questions 1. What is Sickle Cell Disease? a. Sickle Cell Disease is an inherited disorder that affects red blood cells. People with Sickle Cell Disease have red blood cells that become hard and pointed instead of soft and round. Sickle cells cause anemia, pain and many other problems. 2. What is Sickle Cell Trait? b. If you've sickle cell trait, you have inherited the gene for sickle cell disease. Sickle cel trait does not turn into sickle cell disease. If someone has sickle cell trait and his/her partner has sickle cell trait they may produce a child with sickle cell disease. There are about 2.5 million people in America with sickle cell trait. 3. If sickle cell trait is not an illness, why are people tested? c. Babies are tested to see if they have sickle cell disease. Teens and adults are tested mainly to see if they can have a baby with the disease. 4. What medical problems are caused by sickle cell disease? d. Lung tissue damage, pain episodes and stroke. The blockage of blood flow caused by sickled cells also causes damage to most organs including the spleen, kidneys and liver. 5. How many people have sickle cell disease? e. Sickle cell disease is a global health problem. In the United States it is estimated that over 70,000 people have sickle cell disease. About 1000 babies are born with the disease each year in America. 6. How one does a person with sickle cell disease live? f. The average life expectancy in America has improved. It is now in the mid 40 years of age range. 7. Are people of African descent the only group affected? g. No. It is also present in Portuguese, Spanish, French, Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, , Turks and Cypriots. Sickle cell disease also appears in Middle Eastern countries and Asia. 8. Is there a cure? h. There is no universal cure for sickle cell disease. Research i gene therapy, the ultimate universal cure, is currently underway. 9. What are some promising treatment developments? i. The use of hydroxyurea has shown promising results on some adult sickle cell patients. it reduces the frequency of severe pain, acute chest syndrome and the need for blood transfusions. 10. Can people with sickle cell disease live a productive life? j. Yes. But like all patients with chronic disease, sickle cell patients are best managed in a comprehensive multi-disciplinary program of care and a strong extended support system.