Did you know that beta thalassemia major, the most severe form of thalassemia, affects at least 1,000 people in the United States? By staying committed to long-term treatment, people with thalassemia can enjoy a full life.
Thalassemia is a group of blood disorders passed from parents to children through genes (inherited). A person who has thalassemia makes fewer healthy red blood cells. Their red blood cells do not produce enough hemoglobin, the protein that carries oxygen throughout the body. People with severe thalassemia can have various medical complications. They might also require lifelong blood transfusions for treatment.
Living with Thalassemia
Specialized care across the lifespan can help people who have thalassemia live as healthy as possible. Thalassemia is a treatable disorder that can be well-managed with blood transfusions and chelation therapyexternal icon. A person with thalassemia will need to receive medical care on a regular basis from a hematologist (a medical specialist who treats diseases or disorders of the blood). If a doctor has prescribed either blood transfusions or chelation therapy, the most important thing a person with thalassemia can do is stick to their treatment schedules to prevent severe anemia (low numbers of red blood cells) and possible organ damage from iron overload.
With proper medical care and positive attitudes, Tracy and her daughters live full and thriving lives with thalassemia.
Tracy Antonelli did not receive her first red blood cell transfusion, a treatment for thalassemia, until the age of 36. Thalassemia, however, has had a big impact on her life since early childhood. By age 4, she was tired and anemic; eventually, she was diagnosed with thalassemia intermedia—a type of thalassemia that typically does not require treatment with blood transfusions until adulthood.
Read more about Tracy’s story here.
CDC’s National Center on Birth Defects and Developmental Disabilities conducts the following activities:
Blood Safety Monitoring for People with Blood Disorders
CDC funds one project that monitors blood safety in people with blood disorders. This project is called “Characterizing the Complications Associated with Therapeutic Blood Transfusions for Hemoglobinopathies.” Georgia State University, the University of Florida, and the University of California at San Francisco Benioff Children’s Hospital Oakland have been awarded funding to look at transfusion-related complications in people with hemoglobin disorders (sickle cell disease and thalassemia) and develop approaches for reducing these complications. In addition, CDC funds the Association of Public Health Laboratories to provide public health technical assistance with screening (a test to look for a disease before it is noticeable) activities, including needs assessments for laboratories, as well as education for patients, caregivers, and healthcare workers on hemoglobinopathy screening programs.
To better understand the challenges of keeping up with thalassemia treatment, CDC funds the Cooley’s Anemia Foundation (CAF) to continue providing outreach to people who have thalassemia. CAF reaches out to people who have this disorder in order to connect them with information and services that will help with managing thalassemia. CAF also provides technical public health assistance on CDC’s Public Health Webinar Series on Blood Disorders.