Thalassemia Patient & Family Handbook

LIVER PROBLEMS The liver is an organ in the abdomen that filters waste from the body. Iron overload in the liver can lead to scarring called fibrosis . If the liver becomes very scarred, cirrhosis can occur. Cirrhosis is a serious complication because the liver cannot remove wastes properly. Other serious problems include liver infections from viruses such as hepatitis A, B, or C (hepatitis B and C also can cause cirrhosis). In the past, the spread of viruses through blood transfusions was a serious concern. Now there are many steps in place to prevent this, such as regular testing of blood products for these viruses. It is rec- ommended that patients with thalassemia be vaccinated for hepatitis A and B. There is no vaccine for hepatitis C. Your child’s healthcare team will test for these viruses regularly. PREGNANCY It is common for thalassemia and its complications to become more severe during pregnancy. There are risks to the developing baby as well. Young women who are pregnant must be closely monitored by both a specialist in high-risk pregnancy and a hematologist. n WHAT TYPES OF TESTS AND PROCEDURES WILL MY CHILD NEED? BLOOD TESTS Regular blood tests are needed to monitor the effects and complications of thalassemia and your child’s re- sponse to treatment. Blood tests involve a needle being inserted into a vein so a blood sample can be collected. Common blood tests for children with thalassemia include the following: • Hemoglobin electrophoresis—diagnoses thalassemia. This test measures the different types of hemo- globin made in the body. • Gene analysis—determines which globin genes are missing or damaged. There is a test for both alpha and beta globin genes. • Complete blood count (CBC)—determines the number of white blood cells (infection-fighting cells) and platelets (clot-forming cells) and the level of hemoglobin (degree of anemia) in your child’s body. A reticulocyte count, which measures the rate at which the body is producing new red blood cells, is often done with a CBC. • Chemistry panel—checks that your child’s body has the correct amount of certain important substances, such as electrolytes, protein, and sugar. It also checks the liver and kidney function and nutritional status. • Ferritin level—measures the level of iron in your child’s body and is a screening test for iron overload.

• Blood type and antibody screen—helps identify the correct donor blood for your child. This is done each time your child needs a blood transfusion. • Hepatitis panel—tests for hepatitis A, B, and C viruses. • Blood tests to measure thyroid function, cortisol levels, glucose levels, insulin levels, and sex hormones such as testosterone and estrogen—monitor the health of your child’s endocrine system.

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