Real Stories from People Living with Thalassemia
When Amy Pizzulli was born in 1956, her parents were told that the life expectancy for a person born with thalassemia in the United States was 12 to 13 years of age. Throughout her childhood, Amy’s mother told her, “We’re going to make the most of the time we have together.” As Amy moved from childhood to adulthood, her great strength and positive outlook allowed her to face the challenges of living with a chronic illness; she also credits her childhood hematologist (doctor who studies blood disorders) with her relatively good health in childhood and beyond.
Amy pursued a Bachelor’s Degree in teaching, and considers her college education as one of the best things that ever happened to her. Just like other college students her age, she enjoyed participating in academic life and didn’t want to be treated as different or fragile, despite having thalassemia. She would return home for transfusion treatment, as needed. Her first 3 years of college were a time of great growth and independence.
By her final year of college, the buildup of iron in Amy’s heart, a side effect of transfusions, had caused her to go into heart failure. At that point she had great difficulty even turning over in bed. To remove this excess iron, Amy needed chelation therapy. Fortunately, a new chelation treatment (deferoxamine) became available in the United States at this time, so Amy started chelation therapy for the first time at age 21. Between chelation and a more aggressive transfusion regimen, she gradually started breathing and moving better. Although the chelation was difficult to administer, Amy knew it was removing the excess iron from her heart. “I saw the huge difference that chelation made in my life,” she said. “Because of that, I never struggled with staying on track with my thalassemia treatment. I knew that chelation had given me a new life.”
After graduation, Amy began teaching third grade as an elementary school teacher in New Jersey; she also taught Honors math and science. Being a teacher was extremely satisfying for Amy. It means the world to her now when former students write to thank her for contributing to their success in life. In order to avoid missing work to receive transfusions, Amy began attending the night transfusion clinic at New York Hospital. This turned out to be one of the greatest experiences of her life. For the first time, she was exposed to a large group of fellow patients who served as a support network. Being around them made her feel much less isolated. Hearing other patients’ stories helped her realize that if others were able to get through their situations in managing thalassemia treatment, she could as well.
Because of her thalassemia diagnosis, Amy’s mother tried to prepare her for the possibility that she might not ever marry; as a result, Amy never felt pressured to find a husband. However, at the evening transfusion clinic, she met a fellow patient named Danny, who was a very positive influence on her; they married within 2 years. “We always felt that, together, we were going to make it,” said Amy. Still, she remembers being afraid to buy a house because she wasn’t entirely sure what the future held in store for them – but they bought the house anyway. Danny suggested that they take out a 401(k) plan. Amy recalls thinking, “We’re never going to make it to retirement!” Sadly, Danny passed away after 16 years of marriage. It was very hard on Amy to lose Danny, but she got through it with the help of family and friends. Eventually, Amy met Ted. Early in their relationship, she told Ted, very matter-of-factly, that she had thalassemia. He told her that it didn’t make a difference to him. They eventually married, and Ted has been extremely supportive as Amy has also managed diabetes and osteoporosis, complications associated with thalassemia.
Amy retired from teaching in 2014 after 35 years of work. “I never expected to make it to retirement. I have lived a great life!” she said. Here are some of her tips for others living with thalassemia:
- Surround yourself with people who are positive and who support you. Try not to become fearful about what could happen, as this might cause you to spiral down and ruin all of the good things that you already have.
- Know that as people with thalassemia approach mid-life, new health challenges may arise that have less to do with thalassemia and more with the process of aging. In addition to your hematologist, it is important to have a primary care doctor you can work with to manage aging issues. Stay positive, and don’t be overwhelmed by these things. Think of managing all of your health as an investment in your future.
- Stick to your chelation schedule, and be part of a support group that knows what you’re going through.
- Set life goals for yourself. And definitely take out a retirement plan!
CDC thanks Amy for sharing her personal story. Top of Page
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 icon, 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 icon 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 icon, 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.
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