Alpha Thalassemia (cont.)
Can Thalassemias Be Prevented?
Thalassemias can't be prevented because they're inherited (passed on from
parents to children). However, these bleeding disorders can be found before
birth through prenatal tests.
Family genetic studies may help find out whether people have missing or
altered hemoglobin genes that cause thalassemias.
If you know of family members who have thalassemias and you're thinking of
having children, consider talking with your doctor and/or a genetic counselor.
They can help determine your risk for passing on the disorder to your child.
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
hepatitis 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.
Next: Thalassemias At A Glance »
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