International Thalassemia Awareness
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 healthily 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.
My name is Yanyi Li and I moved to the United States from China at age 15. When I was a baby, my family was told that I have beta thalassemia, a disorder which keeps my body from making red blood cells properly. Therefore, I have to receive blood transfusions my entire life in order to treat thalassemia. I dropped out of school in third grade due to complications from thalassemia and the lack of routine treatment in China. I also found it difficult to focus and study because of my concerns and questions about thalassemia and the effects it was having on my life, such as delay in growth. In addition, in my culture, it is difficult for many families to talk about thalassemia. I am now trying to be more open with my friends and family about this blood disorder.
After my family and I came to the United States, I was eventually able to return to school and finish my elementary and high school education. This was a turning point in my life. I was also finally able to receive consistent treatment and care for thalassemia from a hematologist, a doctor who specializes in blood disorders. I started receiving blood transfusions every two weeks and taking a medicine called a chelator that removes the excess iron that builds up in my organs. This excess iron is a complication of the frequent blood transfusion treatment for thalassemia, and the excess iron must be removed in order for me to stay healthy.
The nurses and doctors in the United States took great care of me during office visits, as well as when I was in the hospital to have my spleen taken out. I received great care from a very special nurse in the hematologist’s office named Jennie. During that time, I felt a great deal of despair from the effects of thalassemia and its complications. Jennie took care of me and comforted me. She also enlightened me about the possibilities for my life once I was feeling better and receiving complete and consistent treatment for thalassemia. Most importantly, she assured me that I would achieve my dreams in life. After all these positive experiences, I decided I wanted to become a nurse, just like Jennie and the other nurses who provided such good care to help people with thalassemia.
Read more about Yanyi’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.
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.