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. |