Did you know that beta thalassemia major is the most severe form of thalassemia? 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 (a routine medical procedure using donated blood) 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.
John Zuke was diagnosed with thalassemia at 4 years of age, after his family traveled to the nearest large city (Cleveland, Ohio) in search of a doctor with the experience to correctly identify the cause of his severe anemia. Shortly thereafter, John began treatment by receiving regular blood transfusions.
Thalassemia has had a big impact on John’s life. “I feel like I have lived five lives in 48 years, having been through many seasons of life and of thalassemia,” said John. “I’ve had so many ups and downs, but I’m still moving forward, slowly and steadily, taking in everything that life has to offer.”
Read more about John’s story here.
CDC’s National Center on Birth Defects and Developmental Disabilities conducts the following activities:
Transfusion Complications Monitoring for People with Blood Disorders
CDC funds one project that monitors transfusion complications in people with blood disorders. Georgia State University, the Joan & Sanford I. Weill Medical College of Cornell University, and the University of California San Francisco 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.
Newborn Screening and Genetics
CDC funds the Association of Public Health Laboratories (APHL) to provide assistance to laboratories that perform hemoglobinopathy (thalassemia or sickle cell disease) screening. Screening refers to laboratory tests to look for a disease before it is noticeable. APHL helps laboratories to assess their current screening activities and to develop educational materials 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. As a part of its funding, CAF has also developed training for healthcare providers. Learn more about the Virtual Thalassemia Grand Rounds.