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.
At Fred Hutchinson Cancer Center, we believe sickle cell disease does not have to define who you are or what you can do. Our sickle cell specialists work closely with you, your family and each other to understand and meet your needs. We provide all standard therapies. We also offer you access to the latest treatments through clinical trials.
Our doctors provide the full range of sickle cell disease treatments. Based on your exact case, your treatment may include medicines, like hydroxyurea, crizanlizumab, L-glutamine and voxelotor, and blood transfusions. For some patients, a blood and marrow transplant may be an important option. Your Fred Hutch team works to reduce your risk for painful episodes and make sure you get the care you need when you do have pain. We also help to deal with any other symptoms you have, maintain your health and prevent or manage complications.
As you go through treatment, your needs may change. Your care team at Fred Hutch is with you each step of the way. For example, we will help you deal with any side effects you have. We may suggest adding a new therapy that was just approved. To protect your health over the long term, we will keep seeing you for as long as you need us.
— Kleber Yotsumoto Fertrin, MD, PhD, hematologist
Sickle cell disease treatment is highly customized for each patient’s needs.
Your Fred Hutch hematologist works with an entire group of physicians who specialize in blood disorders, like sickle cell disease. Together, they hold sickle cell rounds — meetings to discuss their patients’ treatment plans. If your care team is thinking about a blood or marrow transplant for you, they may meet with other types of team members to talk about this option, like a radiation oncologist and pathologist.
This approach means you benefit from the experience of the whole group.
With support from the larger team, your physician will:
Your care team will walk you and your caregiver through the treatment plan we recommend for you. You will have a chance to share your personal preferences, and you will decide together what happens next.
The treatment plan we design for you depends on many things, including:
Factors like these help us make decisions about the standard therapies and clinical trials that are right for you.
Because sickle cell disease can range from mild to severe and it can change over time, there is no single way to treat everyone. However, most people get medicines to prevent sickling (when red blood cells become crescent-shaped), to prevent or reduce pain or to manage other effects of the disease. Transfusions of healthy red blood cells are another common treatment. For people seeking a cure, a blood or marrow transplant may be an option.
At Fred Hutch, our standard always involves caring for you as a whole person. We help you get relief from side effects and provide many other forms of support, like integrative medicine, nutrition counseling and physical therapy. We also make sure you have a team of specialists to check for, prevent and manage complications that can affect different parts of your body, like your eyes, heart and kidneys.
Our patients can choose to have promising new therapies that you can get only through a clinical trial. Many people come to Fred Hutch to be part of these studies. Your care team will tell you about studies that might be right for you, so you can think about joining them.
Your sickle cell disease care team will see you regularly for exams and tests to check:
We update your treatment plan based on the best scientific evidence as well as how your disease responds and what you prefer.
You can take many steps to stay as healthy as possible with sickle cell disease. One of the most important steps is to work closely with your care team. Look over this checklist, and talk with your team about each recommendation.
Your team will check your blood counts (level of blood cells) from time to time to see if you are taking a safe dose of hydroxyurea. If your blood counts (especially neutrophils and platelets) get too low, your team will reduce your dose. The best dose decreases your blood counts a lot, but not too much. Taking the best dose can help prevent pain crises and keep you out of the hospital.
What you can do:
Because of sickle cell disease, your spleen might not work well, or it might have been removed. This puts you at higher risk for infection. To help protect you, we recommend getting certain vaccines.
Ask your health care provider if you need these or any other vaccines:
Sickle cell could be harming your body in ways you don’t feel yet. Screenings can check for signs now that could turn into big problems later. This gives you the chance to get care to help prevent more damage.
Ask your care team about these screenings for people with sickle cell disease:
All adults need routine wellness care, like regular check-ups and tests to check for health problems before they cause symptoms.
You might be wondering about possible side effects from treatment, like nausea from hydroxyurea or L-glutamine or iron overload from blood transfusions.
You are always at the center of everything we do. Sickle cell physicians, nurses and advanced practice providers are here to help prevent or relieve side effects of treatment.
Along with treating your sickle cell disease, Fred Hutch provides a range of services to support you and your caregiver. This is part of how we take care of you — not just your disease.
From registered dietitians to social workers and spiritual health staff, we have experts who specialize in caring for people with blood disorders or cancer. We understand that living with sickle cell disease can be an intense and challenging experience for you and your family. We are here to provide the care you need.
Learn more about Supportive Care
Throughout treatment, your team provides follow-up care and support on a schedule designed for you. We understand that your disease and treatment might impact nearly every aspect of your life. We’re here to help you cope with the physical, practical and emotional effects.
At follow-up visits, you will see the same Sickle Cell Disease Clinic team. If you do not live close to Fred Hutch and you prefer to travel here less often, we will work with your local health care providers to make sure you get the follow-up care you need.
For people who had a blood or marrow transplant, the Fred Hutch Long-Term Follow-Up Program provides lifelong monitoring and care.