Skip to main content

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.
Labels:

Comments

Post a Comment

Popular posts from this blog

Thalassemia Minor: Understanding the Silent Carrier

Introduction: Thalassemia is a genetic blood disorder characterized by abnormal hemoglobin production, leading to anemia. Thalassemia minor, also known as thalassemia trait or carrier state, is the mildest form of thalassemia. Individuals with thalassemia minor typically have one normal hemoglobin gene and one mutated hemoglobin gene. Although it is considered a mild condition, understanding thalassemia minor is crucial due to its implications for genetic counseling and potential complications during pregnancy. Genetic Basis and Inheritance: Thalassemia minor is inherited in an autosomal recessive manner, meaning that both parents must carry the gene mutation for their child to have thalassemia minor. The mutated genes affect the production of either the alpha or beta globin chains that make up hemoglobin, the protein responsible for carrying oxygen in the blood. The severity of thalassemia is influenced by the specific gene mutation and the extent to which the normal gene is affected....
Post a Comment
Read more

Diagnosis

Thalassemia can be diagnosed in different ways. Some types can be found on routine blood tests that show that the red blood cells are small or the patient is anemic. Testing of parents can be done before pregnancy to determine whether there is a risk of having a child with a severe form of thalassemia. The illness can be seen in sophisticated genetic testing, and can be found prenatally through amniocentesis or chorionic villus sampling (CVS).
Post a Comment
Read more

Innovations and Research

As one of five thalassemia centers in the United States designated by the National Institutes of Health, the Children's Hospital Boston thalassemia program provides patients with access to experts in the field and the most cutting-edge clinical trials available in the world. One promising recent study, now awaiting approval by the FDA, tested the effectiveness of a new oral iron chelator, deferisirox. Researchers from Children's Hospital Boston have been at the forefront of thalassemia research and treatment for decades. Important advances in the field that were made here include: • Recognition of the important role of hypertransfusion by Dr. David Nathan, Senior Associate in Hematology, in the 1960s. • Demonstration of effective iron chelation by subcutaneous pump deferoxamine (Desferal ®) by Dr. Richard Proper and David Nathan in the 1970s. • Elucidation of the molecular biology of thalassemia syndromes by Drs. Nathan, YW Kan, Stuart Orkin and others.
Post a Comment
Read more