Living with Thalassemia
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 therapy. 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.
“Fall in love with thalassemia because it is a part of who you are.”
This is Maria Hadjidemetriou’s advice for people living with thalassemia, an inherited blood disorder. She has lived with thalassemia all of her life. Maria, and people like her who have a severe form of the disorder, manage it by getting regular blood transfusions. They also take chelator, which is a medicine that gets rid of extra iron that can build up in the blood and organs due to frequent blood transfusions.
Why does Maria encourage a person with thalassemia to fall in love with the disorder? “Because if you want people to love you, you first have to love yourself. If thalassemia is part of you, that means loving it as well. Once you do that, things start working for you rather than against you.”
Maria credits her parents for teaching her to be very strong so she can meet the challenges of living with thalassemia.
Read more about Maria’s story.
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 has funded the Association of Public Health Laboratories to conduct two webinars on alpha thalassemia.
To better understand the challenges of keeping up with thalassemia treatment, CDC funded 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.