Sickle Cell Anemia and Palliative Care

What is Sickle Cell Anemia?

Sickle cell anemia is a blood condition that affects red blood cells. Here’s how it works:

• Red blood cells contain hemoglobin. The job of hemoglobin is to carry oxygen throughout the body.
• Healthy red blood cells are round, like a donut. But the red blood cells of people with sickle cell anemia can be irregular, sometimes shaped like a “sickle” or crescent.
• The sickle-shaped cells prevent oxygen from flowing properly throughout the body. Poor blood flow results in inflammation and pain.

Sickle cell anemia is passed to you by your parents. Both parents of a person with sickle cell anemia carry the gene that causes it. But it is possible for neither parent to actually have the condition. Sickle cell anemia is much more common among African Americans. There is no way to prevent it.

Understanding Palliative Care

Palliative (pronounced “pal-lee-uh-tiv”) care is specialized medical care for people with serious illness. The goal of palliative care is to improve quality of life for both the patient and their family. It does this by providing relief from the symptoms, pain and stress of a serious illness like sickle cell anemia.

Palliative care is provided by a team of palliative care specialists, including doctors, nurses and social workers who work together with your other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness. Palliative care works hand-in-hand with curative treatment.

Sickle Cell Anemia Symptoms and Treatment – How Palliative Care Can Help

Sickle cell anemia typically begins to show symptoms in childhood, usually between the ages of five and 15. Most patients are not diagnosed until they begin having symptoms such as pain. Most people begin having pain in their abdomen, hips, knees and elbows.

Sometimes the pain symptoms of sickle cell anemia come on slowly. But usually they come on suddenly. When they do, doctors call it a “pain crisis.” A severe pain crisis may require hospitalization until the pain is under control.

It is not easy to deal with sickle cell anemia. But palliative care is there to help. Some palliative care treatments for sickle cell anemia include medicines, techniques and lifestyle changes that can relieve pain, help you sleep and help you relax. Palliative care is proven to make a big, positive difference in how you feel.

Because the disease begins in childhood, learning that you or your child has sickle cell anemia can be very shocking. And adjusting to the idea of living with a chronic illness can also be very hard.

But palliative care specialists are experts in treating the symptoms of conditions like sickle cell anemia and the side effects of treatment. But they can also help you adjust to your condition. They can help you understand complicated medical information. They can help you match treatment choices to your personal needs and goals. They can help manage your fear and anxiety. And they can help you and your family learn how to live a “normal” life, whether it’s in the schoolyard, at work, at home or in relationships. It is important to remember that your palliative care team is 100 percent there for you.

How to Get Palliative Care

If you or a loved one has sickle cell anemia, ask your doctor for a referral to palliative care—the earlier the better. You can receive palliative care in the hospital, at an outpatient clinic and sometimes at home.

Although living with sickle cell anemia is a difficult journey, palliative care can ease your burden and help you achieve the best possible quality of life. For more information, explore GetPalliativeCare.org. Take the quiz to find out if palliative care is right for you. And find providers in your area by visiting the Palliative Care Provider Directory.