Maria’s Story | New York, NY
Cooley’s Anemia Foundation
Maria looks not at the number of years in her life, but the amount of life that’s lived within her years. She’s learned to take this perspective in order to overcome the daunting diagnosis of beta-thalassemia that she received when she was only two years old. Growing up with a blood disorder in the 1980s at a time when the AIDS crisis and tainted blood scares were emerging, Maria experienced discrimination, misunderstanding and even misinformation surrounding beta-thalassemia.
At one point in her life, she was even told she would not be able to have children, a life-long dream of hers. Now a mother of a school-aged child, Maria works to instill confidence, patience and empathy in her daughter, all traits that have gotten Maria through her own journey with beta-thalassemia.
Beta-thalassemia is a blood disorder that reduces the production of hemoglobin in the body. Hemoglobin is the iron-containing protein in red blood cells that carries oxygen to cells throughout the body. People living with beta-thalassemia may experience fatigue and weakness daily. Those requiring regular red blood cell transfusions can develop more life-threatening complications caused by iron overload in the heart, liver and endocrine glands.
“I always say, ‘it’s a great time to have thalassemia.’ The current generation of patients living with beta-thalassemia may not have to go through the same level of pain that I went through. With new therapies emerging, I have hope that there will be a disease-modifying treatment or maybe even a cure for beta-thalassemia in their lifetime.”
Beta-thalassemia can cause more visible physical symptoms as well, such as bone deformities and osteoporosis, something that Maria experienced as a child. She reflects that when she was younger: “I didn’t have the courage or knowledge to explain my disease. When the other kids would tease me because I looked different, I was confused – I looked in the mirror and all I saw was a smiley girl, not the mean names the kids would use.” Her mother was her greatest cheerleader, teaching her that, “Your disease is not going to limit you, but a negative mindset will.” With her mother’s motivation and a learned connection between mind and body, Maria became her own fierce advocate. When she learned the misconception that women with beta-thalassemia would not be able to have children, Maria sought support from a global network of patients living with beta-thalassemia. Now, Maria runs her own Facebook group to create a space for pregnant women and mothers living with the disease to ask questions, seek advice and share their experiences.
Despite her diagnosis, Maria lives her life to the fullest. She travels, spends time with her daughter and, of course, advocates for those living with the disease. Maria serves as a member of the executive board of Cooley’s Anemia, a foundation that works to help people afflicted with various forms of thalassemia. In her lifetime, Maria has seen treatment options expand and the understanding of beta-thalassemia patients improve, but she still notices disparities in drug options across global communities. While she has a limitless outlook on life, Maria wants more choices for patients living with beta-thalassemia so they can continue to live with lower pain levels, and an improved quality of life. Thinking about the future, Maria has a positive outlook: “I always say, ‘it’s a great time to have thalassemia.’ The current generation of patients living with beta-thalassemia may not have to go through the same level of pain that I went through. With new therapies emerging, I have hope that there will be a disease-modifying treatment or maybe even a cure for beta-thalassemia in their lifetime.”