Steps to Better Health Toolkit: Lung Health

What to know

This Steps to Better Health fact sheet provides easy-to-read information for people with sickle cell disease (SCD) about lung health.

Illustration of a patient with his healthcare providers and an X-ray of his lungs.


People with sickle cell disease (SCD) are at greater risk than the general population for lung problems. Lung problems can cause breathing-related difficulties and disorders and sleep-related disorders. Share your medical history with your healthcare team so it can properly identify and treat any complications of SCD you have or may develop. Your healthcare team may include your primary care provider, SCD provider, and any other healthcare specialists. Below is one step you can take towards better lung health.


Talk to your provider if you have, or have ever had, any signs or symptoms of breathing- or sleep-related problems. Use the checklist below to guide this discussion.


Shortness of breath

Difficulty breathing with exercise

Chest pain


Being very sleepy or drowsy during the day

Early morning headaches

Inability to focus or think straight, confusion

Low oxygen levels (“hypoxemia”)

Acute chest syndrome (life-threatening complication of SCD)

Blood clots in the lungs


Frequent pain episodes

Recurring, prolonged erection of penis

Bedwetting after 10 years of age


Congestive heart failure (when the heart’s ability to pump blood to the body is very impaired)

It is important to share your checklist with your provider because he or she may need to perform

  • A sleep study (a test used to diagnose sleep disorders); and/or
  • Routine testing to measure how well your lungs are working.

Learn more about sleep disorders.

This information is based on ASH SCD Guidelines: Cardiopulmonary and Kidney Disease.

Additional resources

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