Bright Future for Thalassemia Despite Complexities That Persist

Maria Hadjidemetriou, who lives with thalassemia, met with her RARE Compassion Program partner, medical student Julia Su, before International Thalassemia Day (May 8) to talk about the obstacles thalassemia patients face, and what the future bears for this rare genetic blood disorder.

Maria has participated in the RARE Compassion Program for several years, and she met Julia Su, who was a medical student interested in pursuing a specialty in hematology. They recently met to talk about Maria’s experience as a thalassemia patient, and what Julia has learned as a medical student interested in hematology.

Maria was diagnosed with Cooley’s Anemia, or beta-thalassemia, a rare genetic blood disorder, as a toddler. Julia is an M.D./Ph.D. student at Zucker School of Medicine at Hofstra/Northwell, and will be a hematology resident at Children’s Hospital of Los Angeles in the fall.

Thalassemia is a rare, genetic blood disease caused by mutations in the beta globin gene (beta-thalassemia) or alpha globin gene (alpha-thalassemia) and characterized by significantly reduced or absent adult hemoglobin production. Thalassemia patients must undergo regular red blood cell transfusions, which can lead to other complexities if they then inherit conditions because of the transfusion. Advances in gene therapy may eliminate or lessen the need for these transfusions, thus increasing quality of life.

RARE Compassion Program

The RARE Compassion Program provides an opportunity for medical students to learn about the unique needs and challenges individuals and their families face living with an undiagnosed or rare disease. The program offers students a chance to build compassion, understanding, and empathetic communication skills, and gain interest in specializing in fields most relevant to rare disease. For patients, the program is an opportunity to advocate for the rare community, gain a greater understanding of the medical system and become better prepared to communicate with their doctors and other medical professionals. The program is open to students and patients worldwide.

Learn more about the RARE Compassion Program