Living with Thalassemias

Survival and quality of life have improved for people who have moderate or severe thalassemias. This is because:

  • More people are able to get blood transfusions now.
  • Blood screening has reduced the number of infections from blood transfusions. Also, treatments for other kinds of infections have improved.
  • Iron chelation treatments are available that are easier for some people to take.
  • Some people have been cured through blood and marrow stem cell transplants.

Living with thalassemia can be challenging, but several approaches can help you cope.

Follow Your Treatment Plan

Following the treatment plan your doctor gives you is important. For example, get blood transfusions as your doctor recommends, and take your iron chelation medicine as prescribed.

Iron chelation treatment can take time and be mildly painful. However, don't stop taking your medicine. The leading cause of death among people who have thalassemias is heart disease caused by iron overload. Iron buildup can damage your heart, liver, and other organs.

Several chelation treatments are now available, including injections and pills. Your doctor will talk with you about which treatment is best for you.

Take folic acid supplements if your doctor prescribes them. Folic acid is a B vitamin that helps build healthy red blood cells. Also, talk with your doctor about whether you need other vitamin or mineral supplements, such as vitamins A, C, or D or selenium.

Get Ongoing Medical Care

Keep your scheduled medical appointments, and get any tests that your doctor recommends.

These tests may include:

  • Monthly complete blood counts and tests for blood iron levels every 3 months
  • Yearly tests for heart function, liver function, and viral infections (for example, hepatitis B and C and HIV)
  • Yearly tests to check for iron buildup in your liver
  • Yearly vision and hearing tests
  • Regular checkups to make sure blood transfusions are working
  • Other tests as needed (such as lung function tests, genetic tests, and tests to match your tissues with a possible donor if a stem cell transplant is being considered)

Children who have thalassemias should receive yearly checkups to monitor their growth and development. The checkups include a physical exam, including a height and weight check, and any necessary tests.

Take Steps To Stay Healthy

Take steps to stay as healthy as possible. Follow a healthy eating plan and your doctor's instructions for taking iron supplements.

Get vaccinations as needed, especially if you've had your spleen removed. You may need vaccines for the flu, pneumonia, hepatitis B, and meningitis. Your doctor will advise you about which vaccines you need.

Watch for signs of infection (such as a fever) and take steps to lower your risk for infection (especially if you've had your spleen removed). For example:

  • Wash your hands often.
  • Avoid crowds during cold and flu season.
  • Keep the skin around the site where you get blood transfusions as clean as possible.
  • Call your doctor if a fever develops.

Emotional Issues and Support

If you or your child has thalassemia, you may have fear, anxiety, depression, or stress. Talk about how you feel with your health care team. Talking to a professional counselor also can help. If you’re very depressed, your doctor may recommend medicines or other treatments that can improve your quality of life.

Joining a patient support group may help you adjust to living with thalassemia. You can see how other people who have the same symptoms have coped with them. Talk with your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

Some teens and young adults who have thalassemias may have a hard time moving from pediatric care to adult care. Doctors and other health professionals who care for these children might not be familiar with adult issues related to the disorder, such as certain complications.

Also, it might be hard for adults who have thalassemias to find doctors who specialize in treating the disorder. Ask your child's doctor to help you find a doctor who can care for your child when the time comes to make the switch. Planning and good communication can help this move go smoothly.

 Source: National Heart, Lung, and Blood Institute, National Institutes of Health.