Thalassemia is a blood condition. If you have it, your body has fewer red blood cells and less hemoglobin than it should. Hemoglobin is important because it lets your red blood cells carry oxygen to all parts of your body.
Treatment is the key to living longer and better. There are also steps you can take to stay as healthy as possible.
Thalassemia is really a group of blood problems, not just one.
To make hemoglobin you need two proteins, alpha and beta. Without enough of one or the other, your red blood cells can’t carry oxygen as they should.
Alpha thalassemia means you lack alpha hemoglobin. With beta thalassemia, you lack beta hemoglobin.
Your doctor may also talk about thalassemia minor and thalassemia major, or Cooley’s anemia. The minor type is less serious than the major one, and your type won’t change.
These can include:
- Slow growth in children
- Wide or brittle bones
- Enlarged spleen (an organ in your abdomen that filters blood and fights disease)
- Pale or yellow skin
- Dark urine
- Poor appetite
- Heart problems
In some people, symptoms show up at birth. In others, it can take a couple of years to see anything. Some people who have thalassemia will show no signs at all.
If you think you may have thalassemia, and if your parents have it, you should see a doctor. She will examine you and will ask questions.
You’ll take blood tests. One is a CBC (complete blood count) test. The other is a hemoglobin electrophoresis test. If you are pregnant or trying to have a baby, there are tests that can be done before birth to learn if the baby will have the condition.
With a mild case, you may feel tired and not need treatment. But if it’s more serious, your organs may not get the oxygen they need.
You might have to get regular blood transfusions. A transfusion is a way to get donated blood or parts of blood that your body needs, like hemoglobin.
How often you need transfusions can vary. Some people have one every few weeks. Your transfusion schedule may change as you get older.
Blood transfusions are important for people with thalassemia. But they can cause too much iron in the blood. That can lead to problems with the heart, liver, and blood sugar. If you get transfusions, you and your doctor will talk about whether you need medicine that can help remove extra iron from your body.
Sometimes, transfusions of blood cause reactions like high fever, nausea, diarrhea, chills, and low blood pressure. If you have any of these, see your doctor. Donated blood in the U.S. is very safe. But there’s a remote chance that you could get an infection from a blood transfusion.
Some people with severe thalassemia have other health problems, like heart or liver disease. Your bones may become thin and brittle. You may be shorter than others because your bones don’t grow normally. And the bones in your face can look out of shape or distorted.
These problems don’t happen to everyone who has thalassemia.
Can You Prevent Thalassemia?
No, you can’t prevent thalassemia, since it’s in your genes.
If you have it and you want to have children, you might want to talk with a genetics counselor. This is an expert in health issues that are passed down through families. The counselor will explain your chance of having a child with thalassemia.
Living with Thalassemia
You’ll want to work closely with your doctor and keep up with your treatments.
If you have thalassemia, follow these habits to stay well:
- Don’t take iron pills.
- Eat a healthy diet to keep your bones strong and give you energy.
- Ask your doctor about supplements like calcium and vitamin D.
- Stay away from sick people and wash your hands often.
- If you get a fever or feel ill, see your doctor.
You may also want to look into joining a support group, so you can connect with other people who have the condition.