A compilation of stories from patients with thalassemia
A compilation of stories of 6 patients and their families living with Alpha Thalassemia Major, which was once considered a fatal disease
Maria Hadjidemetriou is a thalassemia patient and a Board Member and Executive Committee Board Member for the Cooley’s Anemia Foundation (CAF). Maria shares her inspirational story about working as a real estate agent in New York City and raising her daughter Julia while managing the demands of thalassemia.
Olivia Stahl is a young adult from Portland, OR with E Beta Thalassemia who was adopted from Vietnam. In this video, Olivia and her mother Stacey share information about Olivia’s journey with thalassemia, as well as her experience taking part in a gene therapy clinical trial. Please note that gene therapy is at this time still in clinical trials in the United States and has not yet been granted FDA approval for general use. Comments concerning risk are personal assessments and some details may similarly not be the same for all individuals who undergo gene therapy. a compilation of stories from patients with thalassemia
Aaron Cheng’s family learned that he had thalassemia when he was 8 months old. In this video series, Aaron shares how he learned about thalassemia and overcame many challenges in managing his disorder. Aaron also shares how thalassemia influenced his passion to become a physician. The 4-part video series includes the following segments:
- Learning About Thalassemia
Learning about thalassemia can be challenging for any family because of the variety of tests and treatments that people with thalassemia are faced with throughout their lifetime. In this video segment, Aaron shares how his family learned about his diagnosis.
- Transitioning from Pediatric to Adult Thalassemia Care
As children with thalassemia move into young adulthood, they take on more responsibility for managing their blood disorder and its treatment. This time is called transition. In this video segment, Aaron shares how he transitioned and took more responsibility for managing thalassemia as a college student and also during medical school.
- Managing Transfusions and Chelation
Many people with thalassemia require frequent blood transfusions as a part of treatment. They also may require chelation, a treatment that helps prevent iron overload in the organs. In this video segment, Aaron shares how he prepares for transfusions, stays on track with his treatments, and balances thalassemia treatment with his busy life.
- Living with Thalassemia
Living with thalassemia can present many challenges, but it does not have to define one’s life. In this video segment, Aaron shares his tips for successfully living with thalassemia and what other people can do to help people with thalassemia, as well as his passion for becoming a physician.
Robert Mannino, a scientist living with thalassemia, shares some tips for fellow patients on how to manage the condition while living their best lives in the following 2 video segments:
- Importance of Thalassemia Treatments
Many people with thalassemia require frequent blood transfusions to survive. They may also require iron chelation therapy in order to prevent iron from accumulating in their organs. In the first video segment, Robert discusses the importance of staying on track with iron chelation therapy.
- Tips for Transitioning to Adult Care for Thalassemia
As young thalassemia patients enter into adulthood, they take on more responsibility for managing their blood disorder and its treatment in a process called “transitioning to adult care”. In the second video segment, Robert shares some tips about taking charge of one’s healthcare, and how to balance thalassemia management with a busy life.