International Thalassemia Day: Rahul's StoryThalassemia 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 are unable to produce enough hemoglobin, the protein that carries oxygen throughout the body. People who have severe thalassemia require lifelong blood transfusions.
"Right now, I am studying microbiology at the University of Georgia; I want to study medicine so that I can help people, just as others have been able to help me. My goal is to study hematology, concentrating on blood diseases. Eventually, I would really like to travel the world and treat patients in places where blood disorders like thalassemia are especially prevalent.
Signs and SymptomsA lack of oxygen in the bloodstream causes signs and symptoms such as:
- slowed growth and delayed puberty
- bone problems
- mild to severe anemia
- enlarged spleen, liver, or heart
- If you have a severe type of thalassemia you might need regular blood transfusions. Red blood cell transfusions are necessary to provide a temporary supply of healthy red blood cells with normal hemoglobin capable of carrying the oxygen that a person's body needs. Today, most patients with some forms of thalassemia require red blood cell transfusions every two to three weeks, amounting to as much as 52 pints of blood a year. These blood transfusions allow people with thalassemia to feel better and enjoy normal activities.
- Multiple transfusions that patients receive can lead to too much iron in the body. This is known as iron overload. Treatments, known as chelation, reduce the iron overload that occurs. With proper treatment and regular medical monitoring, people with severe thalassemia may now lead long, healthy productive lives.
Living Healthy with ThalassemiaPeople with a severe form of thalassemia can benefit by the following:
- Get an annual comprehensive checkup at a Thalassemia Treatment Center (TTC). You can also have your doctor contact a TTC for more information on your care.
- Understand and adhere to your treatment regimen in order to reduce complications and stay healthy.
- Contact the Cooley's Anemia Foundation, a patient organization, for more information about services for people who have thalassemia.
Thalassemia Treatment CentersThalassemia Treatment Centers (TTCs) are specialized healthcare centers that bring together a team of doctors, nurses, and other health professionals experienced in treating people who have thalassemia. CDC currently funds 7 TTCs in the United States. In addition, there are a number of other treatment centers associated with these TTCs.
Each thalassemia treatment center provides access to multidisciplinary healthcare professionals:
- Hematologists (doctors who specialize in blood)
- Orthopedists (doctors who specialize in bones, joints, and muscles)
- Genetic counselors
- Social workers and other mental health professionals