About Thalassemia

Name of the medical condition and other names that it’s been known by

• Thalassemia

• Cooley's Anemia

• Mediterranean Anemia

• Hemoglobin Bart's Hydrops Fetalis

What is Thalassemia?

Thalassemia is a blood disorder that runs in families. It happens when your body doesn't make enough of a protein called hemoglobin, which is important for red blood cells to carry oxygen throughout your body. There are two main types: alpha thalassemia and beta thalassemia. When you have thalassemia, your body makes less hemoglobin than normal. This causes your red blood cells to be smaller and fewer in number, leading to anemia, which makes you feel tired and weak.

There are different levels of Thalassemia:

• Thalassemia minor or trait: This is the mildest form. People with this type might not have any symptoms or only mild anemia.

• Thalassemia intermedia: This causes moderate to severe anemia and some health problems.

• Thalassemia major: This is the most severe form. People with this type need regular blood transfusions and special medical care.

Symptoms of thalassemia can include:

• Feeling very tired

• Pale skin

• Slow growth in children

• Weak bones

• Enlarged spleen (an organ in your belly that helps filter blood)

• Yellow skin (jaundice)

Thalassemia is caused by changes in genes that you inherit from your parents. If both parents have the thalassemia gene, their child might get a more severe form of the condition. People from certain parts of the world are more likely to have thalassemia. These include people with ancestors from:

• Mediterranean countries (like Greece or Italy)

• Middle East

• Africa

• Southeast Asia

Doctors diagnose thalassemia with blood tests. Treatment depends on how severe the condition is. Some people with mild thalassemia don't need treatment. Others might need:

• Regular blood transfusions

• Medicines to remove extra iron from the body

• Folic acid supplements

• In some cases, a bone marrow transplant

Living with thalassemia can be challenging, but with proper care, many people with the condition can lead full, active lives.

Trend

• In the United States, thalassemia is considered a rare disease. Exact numbers are hard to find, but here's what we know:

• About 100,000 people in the US have thalassemia trait, and around 1,000 have severe forms of thalassemia.

• Number of people that have had it in the last five years: This number hasn't changed much in the past five years because thalassemia is an inherited condition.

• Five year projection: The number of people with thalassemia in the US is expected to stay about the same or increase slightly as more people from at-risk populations immigrate to the country.

History

Thalassemia was first described in 1925 by Dr. Thomas Cooley, which is why one type is called Cooley's anemia. At first, doctors thought it only affected people from the Mediterranean region, which is why it was also called Mediterranean anemia. Over time, they discovered it affects people from other parts of the world too. In the past, children with severe thalassemia often didn't live past their teens. But thanks to better treatments developed since the 1960s, like regular blood transfusions and medicines to remove extra iron from the body, people with thalassemia are living longer, healthier lives. Today, researchers are working on new treatments, including gene therapy, to help people with thalassemia even more.

Source of Information

• National Library of Medicine — MedlinePlus

• Johns Hopkins Medicine

• Centers for Disease Control and Prevention (CDC)

For informational purposes only. Consult a medical professional for advice.