Living with thalassemia

  • Importance of adhering to treatment strictly

    • Lifelong treatments and regular monitoring are important for children with severe form of thalassemia. Bone marrow transplantation is not possible for all patients because of multiple reasons. The most important reason is to get the best-matched donor. Regular blood transfusion, excess iron removing medications and regular checking of growth, development and well being are the most important and commonly available treatments for many children with thalassemia major. If regular blood transfusion is not given in spite of low hemoglobin, it can lead to severe anemia, heart failure, and eventual death. If excess iron is not removed it can cause liver enlargement, liver failure, heart failure, diabetes, and premature death.
    If regular blood investigations and scanning are not done, it may not be possible to detect complications early. Therefore, strict adherence to the treatments and regular follow up with doctors are very important.

  • Nutrition

    • What are the tests needed to assess nutrional status?

    Annual nutritional laboratory testing should include albumin, 25-hydroxy vitamin D, fasting glucose, , and serum Folate.


    Do we need to avoid iron rich food in non-transfusion dependent thalassemia patients?

    For non-transfused dependent thalassemia patients, It is recommended to consume a moderately low-iron diet. Drinking black tea with meals is recommended to reduce iron absorption from food.


    Do we need avoid iron rich food in thalassemia patients on iron chelation therapy?

    Avoiding of iron rich food is not necessary for patients who get regular transfusion and on iron chelation therapy as it may decrease the quality of life as well.


    What are Iron rich foods to be avoided or reduced from the foods for children with non-transfusion dependent thalassemia patients?

    Foods containing very high iron are

    • Oysters
    • Liver
    • Beans
    • Beef
    • Peanut butter
    • Prunes
    • Watermelon
    • Spinach
    • Green leafy vegetables
    • Dates
    • Raisins
    • Broccoli
    • Peas
    • Fava beans

  • Immunization in Children and Adults who have Thalassemia

    • Optimal immunization is critical for all patients with thalassemia, especially transfused patients.

    What are immunizations to be given to thalassemia patients in addition to routine immunisations?

    • Patients need to be immunized against hepatitis A and B, especially patients on chronic transfusions.
    • Annual monitoring of titers and booster immunizations, when indicated, will ensure patients are well protected.
    • An annual influenza vaccination should also be administered.
    • Immunisation for Children After Bone Marrow Transplantation

      • Centers performing bone marrow transplantation have their own preferred schedule for re immunization of their patients and it should be followed.

  • Psychosocial Support

    • Culturally sensitive psychological support services are an important part of all comprehensive care plans for patients with thalassemia. Thalassemia imposes a significant interference in the lives of patients and their families. The effects are many, wide-ranging from financial difficulties and absence from school and work to substantial obstacles with self-image and self-esteem. All of these issues have a magnificent impact on the effectiveness of therapy and on the quality of life of patients. These challenges are further complicated by normal stages of development gained from infancy to adulthood and by vast cultural differences.
    Psychologists providing support should be experienced and consistent. Medical and psychosocial professionals must also collaborate closely with each other in order to provide optimal care to their patients.