Sickle Cell Disease Prognosis and Outlook

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Advances in diagnosis, treatment and supportive care have greatly improved the outlook for people living with sickle cell disease.

Today, many people with sickle cell disease live well into adulthood and lead active, productive lives. Early diagnosis, routine medical care and individualized treatment have all contributed to better outcomes. Researchers at Fred Hutch Cancer Center continue to lead studies and develop new therapies that are improving quality of life and expanding treatment options.

Although sickle cell disease remains a lifelong condition, ongoing care from Fred Hutch specialists who understand the disease can help reduce complications and support long-term health.

Sickle Cell Disease Care Tailored to You

You and your family are our top priority. At Fred Hutch Cancer Center, we offer comprehensive and compassionate care — personalized to you. You'll have access to the latest treatment options, clinical trials and supportive care services.

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Factors That Affect Prognosis

Every person's experience with sickle cell disease is different. Your outlook depends on many factors, including:

  • Your specific type of sickle cell disease 
  • How often you experience pain episodes or other complications 
  • Whether organs such as the heart, lungs or kidneys have been affected 
  • How well your disease responds to treatment 
  • Your overall health 
  • Receiving routine care from a health care team experienced in treating sickle cell disease 

Because sickle cell disease can change over time, regular follow-up visits help your care team monitor your health and adjust treatment as your needs change.

Why Specialized Care Matters

Sickle cell disease is a complex condition that can affect many parts of the body over a lifetime. 

At Fred Hutch, hematologists who specialize in sickle cell disease work closely with nurses, advanced practice providers and supportive care specialists to provide coordinated, individualized, ongoing care. Your treatment plan is designed to help prevent complications, manage symptoms and support your long-term health.

Learn More About the Sickle Cell Disease Care Team

Checklist for People with Sickle Cell Disease

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.

Check Your Hydroxyurea Dose

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:

  • 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 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 all of 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 
  • COVID-19 vaccine — every year

Get Screened for Complications

Sickle cell disease 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:

  • 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, which is 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 if you have had iron overload. It shows how much iron is in your liver and if 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.