International Thalassemia Awareness
Did you know that beta thalassemia major, the most severe form of thalassemia, affects about 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 and they might require lifelong blood transfusions for treatment.
Living with Thalassemia
Specialized care across the life span 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) or a doctor who specializes in treating patients with thalassemia. 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 transfusion and chelation schedules to prevent severe anemia (low numbers of red blood cells) and possible organ damage from iron overload, respectively.
"I don't remember when I was diagnosed with beta thalassemia major (also known as Cooley's anemia), but my parents tell me I was around one year old," said Aaron Cheng. "I've been under treatment for as long as I can remember. Every three weeks, I receive a blood transfusion to maintain my level of healthy red blood cells."
"Another part of treatment involves taking iron chelation medication to treat iron overload, which results from the transfusions. From infancy until the end of middle school, four times a week I would have to inject a drug called deferoxamine into my body. These injections, placed under my skin, would last for about eight hours each night. Now, instead of daily injections, I take a new oral medicine called deferasirox that I can take every night, which makes my schedule a lot more flexible. As a college student, I am thankful that treatment is becoming more manageable for people with thalassemia."
Aaron is now in his senior year at Harvard, studying his passion—biology. Aaron has conducted laboratory research on iron overload and is studying his own disorder. "In the future, I would like to incorporate biomedical research and patient care in my career as a physician," says Aaron. Aaron also devotes time to getting involved in activities of the Cooley's Anemia Foundation, an organization dedicated to providing services for people with thalassemia.
"Maintaining my treatment routine is my top priority," said Aaron. "It can be challenging at times, but it's worth it. The future looks bright, and I'm looking forward to having the opportunity to give back to the thalassemia community."
CDC's National Center on Birth Defects and Developmental Disabilities conducts the following activities:
Blood Safety Monitoring for People with Blood Disorders
CDC has two primary projects that are monitoring blood safety in people with blood disorders. Georgia State University has been awarded funding to look at transfusion-related complications in people with hemoglobin disorders (sickle cell disease and thalassemia) and develop approaches for reducing them.
The University of Mississippi Medical Center, Michigan Department of Health, Children's Hospital of Los Angeles, and Children's Memorial Hospital in Chicago are analyzing data from a project that was funded by CDC to accomplish the following objectives:
- Gain a better understanding of rare blood types and blood banking practices
- Monitor the rates of transfusion-related problems
- Learn more about the risks associated with blood transfusions, including the risks of infections
- Develop interventions to prevent problems from frequent transfusions
- Perform an annual laboratory analysis to learn more about new infections that can be spread by transfusions
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.