OSF Children's Hospital

Sickle Cell Disease

Sickle cell disease, also known as sickle cell anemia, hemoglobin SS disease, sickling disorder due to hemoglobin S, is a group of inherited red blood cells disorders. People who have sickle cell disease have an abnormal protein in their red blood cells. In the United States, most people who have sickle cell disease are of African ancestry, but the condition is also common in people with a Hispanic background. People who have sickle cell disease inherit two abnormal hemoglobin genes, one from each parent. Sickle cell disease is a lifelong illness. The severity of the disease varies widely from person to person. People with sickle cell disease can experience both acute and chronic signs, symptoms, and complications.

Diagnosis

Your doctor may diagnose sickle cell disease based on the results from newborn screening tests.

Treatment and Health Maintenance

A blood and bone marrow transplant is currently the only cure for some patients who have sickle cell disease. After early diagnosis, the goal is health maintenance to prevent complications and medicines and treatments to manage complications, including chronic pain.

Babies with sickle cell disease should see a hematologist, a doctor with special training in blood diseases such as sickle cell disease. For infants, the first sickle cell disease visit should take place before 8 weeks of age. All people who have sickle cell disease should see their health care providers every three to 12 months, depending on the person’s age. 

Living with Sickle Cell Disease

If you or your child has sickle cell disease, you should learn as much as you can about the disease. Your health care providers are there to help you, and you should feel comfortable asking questions. People with sickle cell disease are encouraged to pursue a healthy lifestyle to prevent and control complications, get ongoing care and learn how to manage any pain.

Sickle Cell Resources

There are many resources available to stay connected and keep informed about sickle cell disease.