Real Stories from People Living with Thalassemia
Tracy Antonelli did not receive her first red blood cell transfusion, a treatment for thalassemia, until the age of 36. Thalassemia, however, has had a big impact on her life since early childhood. By age 4, she was tired and anemic; eventually, she was diagnosed with thalassemia intermedia—a type of thalassemia that typically does not require treatment with blood transfusions until adulthood. However, Tracy’s spleen (an organ above the stomach and under the ribs) was removed when she was 5 years old; and afterward, she had to be admitted to the hospital every time she developed a fever. Growing up, she didn’t know anyone else with thalassemia and sometimes felt very alone.
As an adult, Tracy decided to embrace her thalassemia and began to thrive—not despite having thalassemia, but because of it. Tracy began to attend thalassemia conferences, where she was able to connect with other patients and share her story. She also participated in several thalassemia research studies. She was an outstanding student, and her interest in health care led her to obtain a Master’s degree in Public Health. This was followed by a successful career working on research studies as a clinical trial manager.
When Tracy met Patrick, her future husband, she told him early on that she had thalassemia. Knowing that Tracy had a chronic illness didn’t change his feelings toward her or his hopes for their future. “So much of how others view our thalassemia has to do with how we view it and how we present it to others,” said Tracy. “If we are strong and confident about it and have a positive attitude, then others will probably feel the same way.”
Although Tracy was told that she could have children of her own, she had decided as a young girl that she wanted to adopt out of concern for the many children in this world who are in need of families. As an adult, Tracy learned that there were children with thalassemia available for adoption in China, making her even more driven to adopt.
Knowing that she and Patrick could provide a loving home and access to expert medical care, Tracy and Patrick eventually adopted three girls with thalassemia from China—Emmie, Rosie, and Frannie. They were able to visit one of their daughters’ orphanages, where they saw that the nannies provided the best care that they could with extremely limited resources. All three girls were in desperate need of blood transfusions when they arrived in the United States. With access to the appropriate care, they quickly began to grow and thrive with the love of their forever family. Now, they are a very active family—hiking, bike riding, and traveling together as much as possible. The girls are passionate about their sports activities, which include swimming, dancing, and playing basketball.
As Tracy and the girls take their thalassemia chelator medicine together, they share their feelings about thalassemia, admitting that they sometimes don’t like having to stick themselves with a needle, or that they are sad they have to miss school in order to get a blood transfusion to treat thalassemia. Together, they have learned to acknowledge and accept their feelings about having a chronic illness. And the girls usually conclude, “But we are happy to have these treatments [chelation medicine and blood transfusion] so that we can stay healthy and do all the things that we like to do.”
When Tracy was growing up, she preferred not to tell her friends or teachers that she had thalassemia, even when she was sick or hospitalized. But she is raising her daughters differently—she and her family believe that sharing their story may be helpful to others. Tracy hopes that her daughters’ experiences with thalassemia may be different than her own in some ways. “When I was young, there was a time that I wanted to hide my thalassemia,” said Tracy. “I think it is understandable for my daughters to be private about thalassemia, but I never want them to feel ashamed or alone.” She notes that having thalassemia, or any chronic illness, can bring many good things into a person’s life. “It connects you to a whole community of people who are like you, which enables you to make very special friends. It also teaches you to be resilient and to make the most out of a difficult situation. Thalassemia has brought so many wonderful things into our lives.”
Tracy offers the following tips for others:
- As a patient, or parent of a patient with a rare disorder, you are frequently put in the position of advocating for yourself or your child. Building partnerships with your healthcare providers, so that important decisions are made as part of a team, can help you to get the best possible care.
- Building relationships with groups such as the Cooley’s Anemia FoundationExternal, and with fellow patients and families, can provide an important support network for patients with thalassemia who are trying to live their best lives.
Reflecting on her life, Tracy says “Having thalassemia put me on this amazing journey to our daughters. I am so proud to be living life and thriving with thalassemia, and I hope that my girls will grow up feeling the same way. Even with the challenges it has brought to our lives, thalassemia is something we embrace and are thankful for.”
CDC thanks Tracy for sharing her personal story.
“My name is Rahul Kapoor, and I was born with thalassemia, a blood disorder which requires transfusions every other week to keep me healthy and alive. When I get transfused, the whole process takes seven or eight hours, which means I have to do a lot of “working around” to fit it in my schedule. Also, on transfusion days, I am given several pre-meds which cause me to become very drowsy and keep me from eating properly or functioning for basically an entire day. There are a lot of complications associated with thalassemia, especially transfusion-related iron overload which requires a daily drug treatment, and sometimes it can be scary knowing that excess iron will damage my heart and liver if I can’t get it out. But thanks to the expert care I receive from experienced and knowledgeable doctors, I am able to lead a fulfilling and rewarding life.
“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.
“Giving back to others is something I’ve learned from my own family. I would never have been able to handle all of the challenges associated with thalassemia had I not had a family that was willing to seek out the information that we needed and the medical care that we needed to deal with such a demanding disorder. And they have always been willing to give up a lot of their time to make sure I can stay healthy. Now I hope to one day be able to help others who face difficult medical challenges. I think that knowing from my own experience what they have to go through will help me to better help them.”
CDC would like to thank Rahul and the Cooley’s Anemia FoundationExternal for sharing this personal story.
“I don’t remember when I was diagnosed with beta thalassemia major (also known as Cooley’s anemia), but my parents tell me I was around one year old,” said Aaron Cheng. “I’ve been under treatment for as long as I can remember. Every three weeks, I receive a blood transfusion to maintain my level of healthy red blood cells.”
“Another part of treatment involves taking iron chelation medication to treat iron overload, which results from the transfusions. From infancy until the end of middle school, four times a week I would have to inject a drug called deferoxamine into my body. These injections, placed under my skin, would last for about eight hours each night. Now, instead of daily injections, I take a new oral medicine called deferasirox that I can take every night, which makes my schedule a lot more flexible. As a college student, I am thankful that treatment is becoming more manageable for people with thalassemia.”
Aaron is now in his senior year at Harvard, studying his passion—biology. Aaron has conducted laboratory research on iron overload and is studying his own disorder. “In the future, I would like to incorporate biomedical research and patient care in my career as a physician,” says Aaron. Aaron also devotes time to getting involved in activities of the Cooley’s Anemia FoundationExternal, an organization dedicated to providing services for people with thalassemia.
“Maintaining my treatment routine is my top priority. It can be challenging at times, but it’s worth it. The future looks bright, and I’m looking forward to having the opportunity to give back to the thalassemia community.”
CDC would like to thank Aaron for sharing his personal story.
If you would like to share your personal story, please contact us at Contact CDC-INFO.