In this video, Tracy shares her experience living with beta thalassemia, a genetic blood disorder that affects hemoglobin and can cause profound anemia. Diagnosed at age five after routine bloodwork revealed severe anemia, Tracy has beta thalassemia intermedia, meaning she did not initially require regular transfusions. However, over time her hemoglobin levels steadily declined, and after years of managing without transfusions, increasing complications led her to begin chronic transfusion therapy at age 40. She now receives two to three units of blood every three weeks. Tracy and her husband, who live outside of Boston, adopted three daughters from China who all have beta thalassemia major, the more severe form of the disease that requires regular transfusions.
Thalassemia is truly a family affair in their household. Tracy and her daughters coordinate transfusions, medications, and chelation therapy together, supporting one another through the routine as a “well-oiled machine.” Despite the demands of treatment, the girls are active in gymnastics and basketball and live full, typical lives. Tracy emphasizes that thalassemia does not define them, even though it is a significant part of their lives. The family advocates for blood donation and raises awareness about the condition, highlighting how critical donor support and accessible care are for patients. Tracy encourages newly diagnosed individuals by reminding them that advances in treatment have made it possible to thrive, and she proudly describes herself as living proof that it is possible to live a full and meaningful life with thalassemia.
Transcript:
I’m Tracy. I live outside of Boston with my husband and three daughters. I have thalassemia, and we adopted three daughters who also have a genetic blood disorder that affects the red blood cells. Patients with thalassemia have less normal hemoglobin, so not having enough hemoglobin can lead to profound anemia.
Some patients have what I have, which is called beta thalassemia intermedia, or non–transfusion-dependent. Some patients require transfusions; some patients do not. That’s the category that I fall into. And then there’s beta thalassemia major, and patients with beta thalassemia major require blood transfusions. All three of our daughters have beta thalassemia major.
So my diagnosis happened by mistake. I was in the hospital when I was five years old with just a GI bug, and I had some routine blood work done in the hospital. It showed that I was really anemic, and that’s when the doctors went and tested me for thalassemia. That’s when we also found out that both of my parents were carriers.
When I was young, I was anemic. My hemoglobin was maybe in the eights or something like that. But as I got older, over time my hemoglobin would slowly drop and drop and drop. I would meet with the hematologist every year, and we would talk about when to start transfusions.
So my argument was always, well, look at me. I’m working a busy job. I’m traveling. I’m married. I go to the gym. I don’t feel like I have to start transfusions, or I felt like there was a choice. But then, as I got older, I started to have more complications from being anemic for so long. So the decision was sort of made for me.
When I was 40, I started chronic transfusions. I started getting two to three units of blood every three weeks.
We adopted three daughters from China who all have thalassemia, because we felt we could provide not only a loving home but also medical care for them. Having thalassemia is sort of a family affair for us.
The girls go for their transfusions together. I go on a separate day at night. When it’s time to take medicine, two of my daughters take pills, and they take them at the same time together. They’ll often remind each other, “It’s time to take our pills.”
My oldest daughter and I both use the subcutaneous chelator, and we both do our medicine at the same time. She’ll go and get out the infusion sets and the pumps for us and bring up our medicine, and we do our medicine together. So it’s a pretty well-oiled machine.
You know, they’re just like typical kids. Emmy does gymnastics. Rosie and Franny play basketball. They’re athletic. They’re active. You wouldn’t know that they have thalassemia.
To be honest, thalassemia has actually brought more to my life than it’s taken away. It’s like a lemons-to-lemonade story. So we’ve tried to turn it into something positive.
We use our story to raise awareness about the importance of blood donations. My husband is a regular blood donor. The girls are incredible champions not only for our local hospital but for the blood donor center here.
I always say it doesn’t define us, but it is undeniable that it’s a big part of our lives.
I think what I would want anybody to know about thalassemia is that we’re just like anyone else. We’re typical people with families and jobs and activities and busy lives. Coming up with easier ways for me to refill prescriptions using a text message, easier access to your care team, having places you can go that offer other times for transfusions—ways to make things easier for us—is critical.
So what would I tell somebody who’s been recently diagnosed? I would say you are living in a great time to have thalassemia. And I really mean that, because there are so many patients who are thriving and doing incredible things.
As a family, we’re all very involved with all of that. I’m Tracy, and I’m thriving with thalassemia.
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