Even if you don't receive regular transfusions, thalassemia may come with serious risks. Learn more about these risks and what you can do about them.

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If you are living with thalassemia, you realize that it's about more than whether you have blood transfusions or not. It’s about living well every day.

That’s why we are encouraging you to RETHINK THALASSEMIA.

Thalassemia affects everyone differently, so we want to inspire you to take time to explore how it impacts you personally. We hope we have provided some new and useful information that could help you to manage your day-to-day thalassemia symptoms better and even get ahead of serious thalassemia-related health issues.

What is thalassemia?

Thalassemia is an inherited blood disorder that happens when the body doesn’t make enough healthy hemoglobin—a protein in your red blood cells that transports oxygen from your lungs to the rest of your body.

When red blood cells do not have enough energy (ATP) within, they break down sooner than normal (called hemolysis) or don't mature properly (called ineffective erythropoiesis). This can lead to low hemoglobin, which results in chronic anemia.

Signs and symptoms of thalassemia can vary from person to person. They may be present at birth or develop during the first 2 years of life. Some patients are diagnosed in adulthood. Some people don't have symptoms at all, while others need lifelong treatment.

Thalassemia symptoms

Signs and symptoms of anemia may vary from person to person and can include:



Shortness of breath


Dizziness and fainting


Some people with thalassemia need blood transfusions regularly to help them function. Healthcare providers may perceive “transfusion-dependent” patients as “more severe.” They can be referred to as having “thalassemia major.” Living with thalassemia but not requiring regular transfusions can be referred to as “non–transfusion-dependent” or “thalassemia intermedia.” You may feel lost in the crowd.

No matter how it's described, the daily challenges for patients living with different types of thalassemia are very real.

While you may have realized there's a connection between your thalassemia and the symptoms you experience, others may not. You may feel dismissed and misunderstood when people around you don’t appreciate the true impact of daily symptoms on your life.

“Even going downstairs and back upstairs in your own house feels like you're traveling far...your breathing is labored.”

Hardik, living with beta-thalassemia

Thalassemia complications

Thalassemia can get worse as time goes on—leading to very serious anemia-related symptoms and complications such as fatigue, organ damage, too much iron in the blood, and stroke. Learn more about thalassemia complications.

There are things you can do to get ahead of these risks. Work closely with your doctor to monitor your thalassemia.

Get information, tools, and support.

What’s in the name

The name thalassemia comes from the Greek word “thalassa” meaning “the sea.” It was first described in people living near the Mediterranean Sea. Sometimes people even call thalassemia “Mediterranean anemia.” However, thalassemia is found all around the world, most commonly in people of African, Middle Eastern, Indian, Asian, or Mediterranean descent.

Take a step forward

Connect with someone who understands the challenges of living with thalassemia and can help you reach your goals.

Have a one-on-one conversation with an Agios Clinical Nurse Educator.

Also known as a "CNE," a Clinical Nurse Educator works closely with patients, families, and care teams to offer you individualized support, educational resources, and community connections.* We know that navigating life with thalassemia can be challenging, and Agios is proud to offer CNE support as part of our commitment to the thalassemia community.

*A Clinical Nurse Educator does not provide medical advice. For medical advice or treatment-related questions, please talk to your healthcare team.

“This condition can feel isolating. When you connect with others in the community, it’s like you’re in a room by yourself holding a candle and then another candle turns on, then another, and suddenly the room lights up and you no longer feel alone.”

Jesse, living with alpha-thalassemia

You’re living with thalassemia, but you’re not alone

Living with a complex, chronic condition might lead to feelings of isolation, frustration, or sadness. Feeling overlooked or unheard might make it even harder. It’s OK to acknowledge these feelings.

Others with thalassemia have reported feeling guilty about how symptoms like fatigue prevent them from spending time with loved ones.

But it's important to realize that you're not the only one facing these challenges. There are other people who understand exactly what you're going through—because they are, too.

Reach out to others. Connect with our Facebook and Instagram pages and check out these groups for support, more resources, and events.

“When my doctor finally explained what was going on [with my red blood cells], it helped me understand that it was not all made up in my mind. There is a reason behind this lethargy.”

Real patient living with thalassemia

Thalassemia types and terms

Healthcare providers may discuss thalassemia in a variety of ways.

  • “Alpha-thalassemia” and “beta-thalassemia” refer to genetics and inheritance pattern

  • “Thalassemia major,” “thalassemia minor,” “thalassemia trait,” and “thalassemia intermedia” refer to genetics and severity of anemia

  • “Transfusion-dependent thalassemia” and “non–transfusion-dependent thalassemia” refer to treatment

You may hear a combination of these terms based on your own type of thalassemia. For example, a doctor may describe a person's thalassemia as "non–transfusion-dependent beta-thalassemia."

With alpha-thalassemia, up to 4 genes may be affected. This will determine if it's alpha-thalassemia minimia, minor, intermedia, or major.
Beta-thalassemia can be minor or major. The absence or damage of the beta gene will determine the severity of symptoms.

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With alpha-thalassemia, up to 4 genes may be affected. This will determine if it's alpha-thalassemia minimia, minor, intermedia, or major.


Beta-thalassemia can be minor or major. The absence or damage of the beta gene will determine the severity of symptoms.

You play a critical role in your thalassemia care

It’s important to understand your condition and actively partner with your doctor. Communicate all your symptoms to determine the best management approach and create a plan.

For Patients

Sign Up For Support

Get the latest thalassemia information and connect with a Clinical Nurse Educator.

Clinical Nurse Educators are employees of Agios Pharmaceuticals who work closely with individuals, families, and care teams to provide education, tools, and resources to support people living with thalassemia. They also provide opportunities to make connections with other others affected by thalassemia.

Clinical Nurse Educators do not provide medical advice. For medical advice or treatment-related questions, please talk to your healthcare team.

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1Baer K. A Guide to Living With Thalassemia. Cioffi G, Butler G, eds. Cooley’s Anemia Foundation; 2013. Accessed April 1, 2024. https://thalassemia.org/updates/pdf/GuideToLivingWithThalassemia.pdf 2Lewis S. 8 tips for choosing a hematologist. Healthgrades. May 11, 2020. Accessed March 28, 2024. https://www.healthgrades.com/right-care/blood-conditions/8-tips-for-choosing-a-hematologist 3Dean L. Blood and the cells it contains. In: Blood Groups and Red Cell Antigens. National Center for Biotechnology Information (US); 2005. Accessed March 29, 2024. https://www.ncbi.nlm.nih.gov/books/NBK2263/ 4Iovino P, Vellone E, Cedrone N, Riegel B. A middle-range theory of social isolation in chronic illness. Int J Environ Res Public Health. 2023;20:4940. doi:10.3390/ijerph20064940 5Musallam KM, Rivella S, Vichinsky E, Rachmilewitz EA. Non-transfusion-dependent thalassemias. Haematologica. 2013;98(6):833-844. doi:10.3324/haematol.2012.066845 6National Center for Biotechnology Information (US). Thalassemia. Genes and Disease. National Center for Biotechnology Information (US); 1998. Accessed April 24, 2024. https://www.ncbi.nlm.nih.gov/books/NBK22200/ 7Pouraboli B, Abedi HA, Abbaszadeh A, Kazemi M. Self-care in patients with major thalassemia: a grounded theory. J Caring Sci. 2017;6(2):127-139. doi:10.15171/jcs.2017.013 8Taher AT, Musallam KM, Cappellini MD. Guidelines for the Management of Non-Transfusion-Dependent β-Thalassaemia. 3rd ed. Nicosia, Cyprus: Thalassemia International Federation; 2023. 9Thalassemia facts. Centers for Disease Control and Prevention. Accessed March 20, 2024. https://www.cdc.gov/ncbddd/thalassemia/facts.html 10Thalassemia: symptoms & causes. Mayo Clinic. Accessed March 20, 2024. https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995 11Treatment of thalassemia. Centers for Disease Control and Prevention. Accessed March 29, 2024. https://www.cdc.gov/ncbddd/thalassemia/treatment.html