Sickle Cell Patient Resources

A: Clinics and telehealth visits are available every weekday.

A: The frequency of visits to your provider depends on the nature of the symptoms you’re experiencing and whether there are any concerns about organ function.

A: Sickle cell providers are not primary care physicians, although they do monitor the overall effect of sickle cell disease on your body. Primary care addresses your health concerns, which are not related to sickle cell disease.

A: Hydrea (hydroxyurea) has been shown to prolong life in people with sickle cell disease by preserving kidney, heart, liver and brain function. This medication decreases the number and length of vaso-occlusive crises.

A: Transfusions are used to improve symptoms if an organ is being damaged (stroke, sickle in the liver, maternal/fetal complications, acute lung injury, priapism, leg ulcers and sometimes acute/chronic pain).

A: Possible long-term complications of SCD include kidney failure requiring dialysis, strokes, bleeding into the brain, heart failure, iron overload from transfusions causing heart and liver failure and hemolytic reaction to transfusions which prohibit their use.

A: A sickle trait means you’ve inherited one sickle cell gene from either your mother or father, whereas sickle cell disease means you’ve inherited the gene from both parents. One gene does not cause the disease, but it may have some consequences.

A: Sickle thalassemia can be a milder disease than sickle cell (S-Thal vs SS), especially when it is associated with the production of some normal hemoglobin A.

A: It’s important to use reliable sources to stay informed about the latest facts and research regarding sickle cell disease and related complications. The Center for Disease Control (CDC) is a great resource to learn about the nature of this disease and how to manage it.