Sickle cell disease

Treatment

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.

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.

Team-based approach

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.

Learn More About Supportive Care Services

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. 

Treatment types

Treatment looks different for different people depending on your diagnosis. We tailor your treatment plan to you. Learn more about the treatment types offered at SCCA. 

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.

 

1. Pain and Ethnicity, Virtual Mentor/AMA Journal Ethics. 

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. 

Blood transfusions

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. 

Blood transfusions

A red blood cell transfusion can temporarily provide your body with healthy red blood cells to combat severe anemia.

Hydroxyurea

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.

Hydroxyurea

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.

L-glutamine

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.

L-glutamine

This oral medicine may help reduce the number of sickle cell crises you have.

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. 

Infection prevention and treatment

Special attention to steps like washing your hands, handling food safely and getting recommended vaccinations can help prevent infections.

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.

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.

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.

Acute chest syndrome treatment

If you develop acute chest syndrome, your team will choose treatments based on the cause.

Bone marrow transplant

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. 

Bone marrow transplant

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. 

Transition to adult care

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.

Transition to adult care

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. 

Protecting your health: a checklist for people with sickle cell disease

You can take many steps to stay as healthy as possibly with sickle cell disease. One of the most important steps is to work closely with your care team. Print this checklist, and talk with your team about each recommendation on the list.

Check your hydroxyurea dose

Your team will check your blood counts (level of blood cells) from time to time to tell whether you’re 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:

  • Take your hydroxyurea and folate every day as prescribed.
  • See your health care provider as often as they recommend to check your blood counts.

Keep your vaccines up to date

Because of sickle cell disease, your spleen might not work well or might have been removed. This puts you at increased 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:

  • Influenza vaccine (flu shot) — every year
  • Pneumococcal polysaccharide vaccine (PPSV23 or Pneumovax) for pneumonia — 2 doses, 5 years apart
  • Meningococcal vaccine for meningitis — 2 doses, 2 months apart, followed by boosters every 5 years
  • Haemophilus influenzae type B (Hib) vaccine for meningitis — 1 dose
  • Tetanus booster — every 10 years
  • Hepatitis B vaccine — 3 doses

Get screened for complications

Sickle cell can 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 further damage. 

Ask your care team about these screenings for people with sickle cell disease:

  • Eye exams — every year to check for sickle cell retinopathy.
  • Lung function tests — to tell us if your body is getting enough oxygen. If it’s not, you could get oxygen to use at home.
  • A sleep study — for some people. If you have sleep apnea, your body doesn’t get enough oxygen at night, which can make sickling worse. A special device can help you get more oxygen while you sleep.
  • Echocardiogram (heart ultrasound) — to tell us how your heart is working and if you are getting pulmonary artery hypertension, a serious complication. 
  • Urinalysis — to check for protein in your urine. This helps us know if your kidneys might be injured.
  • Ferritin — a blood test to check for a high level of iron. If you’ve had more than 10 transfusions in your life, you are at risk for iron overload, which can harm your liver.
  • MRI — if your ferritin is high or you have had iron overload. It shows how much iron is in your liver and whether you need a treatment called chelation to remove some iron.

Have routine wellness care 

All adults need routine wellness care, like regular check-ups and tests to check for health problems before they cause symptoms.

  • See your health care provider as often as they recommend for routine wellness care.