Living With Thalassemias

Survival and quality of life are now much better for people who have moderate or severe forms of thalassemia. 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.
• New 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

It's important to follow the treatment plan your doctor gives you. Get blood transfusions as he or she recommends.

Take your iron chelation medicine. This is important because the leading cause of death among people with thalassemias is heart disease caused by iron overload. Iron buildup can damage your heart, liver, and other organs. Although the iron chelation treatment can take time and be mildly painful, it's important that you don't stop taking your medicine.

Several chelation treatments are now available, including injections and pills. Your doctor will talk to 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.

Get Ongoing Medical Care

It's important that you 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 infection (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 against 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 checkup includes a physical exam, including a height and weight check, and any necessary tests.

Take Measures To Stay Healthy

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

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

Watch for signs of infections (such as fever) and take steps to lower your chance of getting an infection. This is especially important if you've had your spleen removed.

• 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 fever develops.

Seek Help and Support

Joining a support group may help you cope with thalassemia if you or your child has it. Talking to others who live with the same issues can help you see how they've coped with them. To find a local support group, contact the Cooley's Anemia Foundation.