Sickle cell disease is a group of inherited blood disorders. It causes red blood cells to take on a crescent (sickle) shape and become rigid. These cells can break apart easily, leading to anemia. Because they are sticky, they can also form clumps and stick to the walls of blood vessels. This can slow or block the flow of blood and make it harder for your body to get oxygen.
Fred Hutch physicians treat all types of sickle cell disease. Your type depends on the genes passed on to you from your parents.
People with sickle cell disease are born with it because they inherited two abnormal hemoglobin genes, one from each parent. Depending on the genes you received, you may have one of these types of the disease.
We have a full range of treatment options for people with all types of sickle cell disease.
Both your parents passed on an abnormal sickle hemoglobin gene (or hemoglobin S).
One parent passed on an abnormal hemoglobin S gene, and the other parent passed on a gene for abnormal hemoglobin C.
One parent passed on an abnormal hemoglobin S gene, and the other parent passed on a gene for beta thalassemia. There are two subtypes: HbS beta O-thalassemia and HbS beta +-thalassemia. (Beta is also written like this: β.)
One parent passed on an abnormal hemoglobin S gene, and the other parent passed on a gene for abnormal hemoglobin D.
One parent passed on an abnormal hemoglobin S gene, and the other parent passed on a gene for abnormal hemoglobin E.
One parent passed on an abnormal hemoglobin S gene, and the other parent passed on a gene for abnormal hemoglobin O.
As a person living with sickle cell disease, your needs and the effects of your disease will change over time. Your care should change, too. The most important step you can take is to partner with health care providers who will plan treatment that is right for you right now. Individualized care helps you live a full, active and healthy life.
Transition from pediatric to adult care
When children with sickle cell disease near adulthood, it’s time to move on to doctors who specialize in caring for adults.
The outlook for people with sickle cell disease has improved greatly in the past 50 years. Early diagnosis and advances in treatment have made a difference.
In countries like the United States, with well-resourced health care systems, more than 90 percent of children with the disease live well into adulthood. The keys are learning how to take the best care of yourself and seeing a health care team that understands your needs.
In the Seattle area, children with sickle cell are treated at Odessa Brown Children’s Clinic, which is part of Seattle Children’s.
We work closely with Seattle Children’s to help young adults and their families make a smooth switch to adult care at Fred Hutch. Our focus is on giving young adults the information, services, skills and support they need to live a long, healthy life.
If you are a young adult with sickle cell disease (or their parent or guardian), talk with your pediatric team about getting ready to move to adult care. Contact Fred Hutch to request an appointment with our experts.
There are many resources online for learning about your disease. Health educators at the Fred Hutch Patient and Family Resource Center have compiled a list of trusted sources to help you get started.
Whether you are newly diagnosed, going through treatment or know someone with cancer, our staff are available to tailor personalized resources and answer questions about support options in the community.
Our list of online resources provides accurate health information from reliable and reputable sources, like the National Cancer Institute (NCI), the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN).
American Society of Hematology (ASH): Sickle Cell Disease
Learn how ASH is advancing sickle cell disease research, amplifying voices and improving outcomes and access to care for individuals with the disease.
MedlinePlus: Sickle Cell Disease
MedlinePlus is a service of the National Library of Medicine (NLM), the world's largest medical library, which is part of the National Institutes of Health (NIH). Read a summary of sickle cell disease here.
Sickle Cell Disease Coalition: Sickle Cell Disease
Understand the impact of sickle cell disease and explore the Sickle Cell Disease Coalition's resource library for helpful tools in coping with the disease.