At Seattle Cancer Care Alliance (SCCA), our world-class experts provide comprehensive treatment for people with sickle cell disease. Living with sickle cell can feel overwhelming at times. We have an experienced, compassionate team ready to help.
SCCA specialists see adults with sickle cell at our outpatient clinic on Lake Union. At any given time, we have about 100 adults in our care. Along with our local patients, we see many people from farther away, like Alaska, who receive most of their care near home and also come here regularly for treatment and advice from our experts.
Children with sickle cell are treated at Odessa Brown Children’s Clinic, part of Seattle Children’s. Seattle Children’s is an SCCA founding organization with a long history of successfully caring for children and teens with this disease. Read about childhood sickle cell disease on Seattle Children’s website.
- Expertise at SCCA
- Pain prevention and management
- Blood transfusions
- Infection prevention and treatment
- Hand-foot syndrome treatment
- Acute chest syndrome treatment
- Bone marrow transplant
- Transition to adult care
- Next steps
Sickle cell disease expertise at SCCA
Everything you need is here
SCCA has hematologists who specialize in nonmalignant blood disorders like sickle cell disease. We offer the most advanced treatment options and extensive support to help you live a healthy, active life. Your SCCA team partners with you, your family and your other health care providers to understand and meet your needs.
Sickle cell disease treatment tailored to you
Your SCCA team develops an individualized treatment plan for you based on your symptoms, how your condition has progressed, your age and your overall health. We combine these factors with the latest scientific knowledge and our experience treating many other people who’ve faced the same illness.
Along with your hematologist, nurses and nurse case manager, we’ll involve additional experts who specialize in treating people with blood disorders if you need them — experts like a social worker, physical therapist, palliative care professional or dietitian.
Ongoing care and support
Throughout treatment, your team provides follow-up care as well as support on a schedule designed for you. We understand that your disease and treatment might impact nearly every aspect of your life, and we’re here to help you cope with the physical, practical and emotional effects.
Pain prevention and management
Over-the-counter medicines, like ibuprofen or acetaminophen, may be enough to control pain from sickle cell disease. But sometimes you may need stronger opioid medicines to take at home or even during treatment at the hospital. Your SCCA team works to ensure you get the care you need for pain.
We can also help you learn to reduce your risk for painful episodes by avoiding triggers, like low fluid intake and extreme changes in temperature.
In the U.S., people with sickle cell disease are usually African Americans, who may have experienced unequal treatment for their health needs, especially their pain. For instance, research shows that overall African Americans tend to receive less treatment for pain than whites do, despite reporting more pain. Also, doctors may be more likely to see African Americans who say they are in pain as drug seeking, even though white people are more likely to misuse opioids.1
At SCCA, our sickle cell team is working to combat health disparities and improve care for everyone with sickle cell disease by educating other health care providers about these issues. In partnership with colleagues at UW School of Medicine, our sickle cell experts and some patient-advocates have teamed up to educate first-year medical students about the racial and socioeconomic disparities some people with sickle cell disease face. Together, they challenge young medical students to care for people with sickle cell disease with compassion and respect.
A red blood cell transfusion can temporarily provide your body with healthy red blood cells to combat severe anemia. It may also help with other life-threatening effects of sickle cell, like acute chest syndrome or splenic sequestration.
Hydroxyurea is a medicine taken every day to reduce pain episodes, recurrence of acute chest syndrome and the need for blood transfusions or hospital stays. To make sure you are getting the right amount of hydroxyurea, your care team will check your blood counts (level of blood cells) from time to time and adjust your dose as needed.
This oral medicine may help reduce the number of sickle cell crises you have. It may make your red blood cells more flexible so they can flow through your bloodstream more easily.
Infection prevention and treatment
Special attention to steps like washing your hands, handling food safely and getting recommended vaccinations can help prevent infections. If you do get an infection, it’s important to see your care team right away for treatment, like antibiotics.
Treatment for hand-foot syndrome or dactylitis
Pain medicine and increased fluids are the main treatments for hand-foot syndrome, in which your hands and feet swell because your blood vessels are blocked. You might also hear this called “dactylitis,” which refers to inflamed fingers or toes.
Acute chest syndrome treatment
If you develop acute chest syndrome, your team will choose treatments based on the cause. Common treatments include getting oxygen, taking medicine to fight an infection or open your airways and having a blood transfusion.
Bone marrow transplant for sickle cell disease
So far, a bone marrow transplant is the only treatment with the potential to cure sickle cell disease. It is an important option for some adults, but it does have risks and side effects.
Doctors at the Fred Hutch Bone Marrow Transplant Program at SCCA have performed more than 16,000 bone marrow transplants — more than any other institution in the world — including for people with sickle cell.
We can talk with you and your family about the possible benefits and risks, whether we recommend a transplant for you, why and what to expect. Our transplant specialists will answer your questions and help you reach a decision that’s right for you.
Transition to adult care for sickle cell disease
When children with sickle cell disease are nearing adulthood, it’s time for them to transition from care with pediatric experts to care with doctors who specialize in treating adults.
At SCCA, we work closely with Seattle Children’s to help young adults and their families make this transition. Our focus is on providing young adults with the information, services, skills and support they need to live their best, healthiest and longest life.
- Request an appointment to see an SCCA sickle cell disease expert.
- Learn about sickle cell disease symptoms and complications.
- Get a checklist to help you protect your health with sickle cell disease.
- Read stories of people who've had sickle cell disease.
- Find resources and support for new SCCA patients.
1. Pain and Ethnicity, Virtual Mentor/AMA Journal Ethics.