Thalassemia
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Thalassemia

Thalassemia Living With

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Survival and quality of life have improved for people who have thalassemia. This is because:

Even so, people who have thalassemia should work with their provider to follow their treatment plan. Thalassemia can lead to serious health problems.

If you have a child with thalassemia, talk to your child’s healthcare provider about how to transition from pediatric to adult care before the time comes.

What steps can you take to manage the condition?

Receive routine care

It is important for people who have thalassemia to keep up with their health. Children who have thalassemia need regular checkups to make sure they’re growing properly. Your child’s healthcare provider may recommend that your child see a nutritionist.

Getting recommended vaccines is also important, especially if you have had your spleen removed (splenectomy). These include routine vaccines for pneumococcus, hepatitis B, meningitis, and COVID-19, as well as a flu shot every year at the start of flu season. Anyone who lives with you or whom you see often should also get regular vaccines.

Watch for health problems caused by thalassemia or related treatments

Major complications in people who have thalassemia are usually caused by iron buildup in the blood (iron overload). Iron overload can be caused by thalassemia, but it most often comes from regular blood transfusions. Iron overload can damage organs and tissues. The treatment for iron overload, called iron chelation therapy, can help prevent complications.

Health problems related to thalassemia and regular blood transfusions include:

  • Blood clots that can lead to venous thromboembolism or stroke
  • Dementia
  • Diabetes
  • Gallstones, which are hard, pebble-like deposits that can form in the gallbladder
  • Heart problems, such as arrhythmias, heart failure, or heart attack
  • hormone problems, which can cause slow growth and delayed puberty
  • Infections, especially if you have had your spleen removed (splenectomy)
  • Leg ulcers, which are sores that take a long time to heal
  • Organ damage, including the liver and kidneys
  • Osteoporosis
  • Pain in the lower back and legs
  • Spleen that is larger than normal
  • Vitamin and micronutrient deficiencies, especially zinc, copper, vitamin C, vitamin D, and folate

Monitor your health

Your provider may recommend you get the following regular blood tests to check your health throughout the year:

  • Iron levels, every 3 months
  • Liver function, every 6 months
  • Viral infections, yearly
  • Endocrine function, which controls growth and development, yearly (this includes pituitary hormones, thyroid function, glucose tolerance, and micronutrients)

Your provider may also recommend other tests to monitor thalassemia.

  • Bone mineral density tests can detect signs of osteoporosis. Bone mineral density testing may be done with an X-ray test called a dual-energy X-ray absorptiometry (DEXA) scan.
  • Cardiac MRI can get detailed pictures of the structure and function of your heart and surrounding blood vessels.
  • Echocardiography can show how your blood is moving through your heart and major blood vessels.
  • Liver MRIs or biopsy can show iron buildup.
  • Regular vision and hearing tests are important for people who take the medicine deferoxamine as an iron chelation therapy.

Adopt a healthy lifestyle

Thalassemia can cause lower levels of important vitamins and micronutrients in the body. Following a healthy diet can help raise them. Your healthcare provider may also recommend nutritional supplements if you cannot get vitamins and minerals you need from food.

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Get regular physical activity

Regular physical activity can help manage risk factors for heart disease such as high blood cholesterol, high blood pressure, and overweight and obesity. Before starting any exercise program, ask about what level of physical activity is right for you. 

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Get enough good quality sleep

Not getting enough good quality sleep over time can lead to serious physical and mental health problems. The recommended amount of sleep for adults is 7 to 9 hours a day. 

 

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