Amy Cohen, a resident of Lynn, Massachusetts, is set to run in the New York City Marathon on November 5, 2023, as part of the inspiring “Team Inspire.” Diagnosed with sickle cell disease, a debilitating genetic blood disorder, Cohen aims to challenge the stigma associated with her condition while showcasing her resilience.
Overcoming Pain and Stigma
Sickle cell disease affects the shape and function of red blood cells, causing them to take on a crescent or sickle shape. This shape leads to painful blockages in blood vessels, depriving organs and tissues of oxygen. Cohen, whose parents are from West Africa, recalls the cautious attitude surrounding her condition during her childhood. “The perception of sickle cell is like, ‘Oh, the kids couldn’t even go to P.E. growing up,'” she said.
Only about 100,000 Americans are currently living with sickle cell disease, which can lead to severe pain crises described by patients as akin to “bones breaking from the inside” or “hot pokers” piercing through their bodies. Dr. Sharl Azar, a hematologist at the Mass General Hospital Sickle Cell Disease Treatment Center, has witnessed the struggles faced by patients like Cohen. “Witnessing sickle cell crises is absolutely awful,” he stated.
A New Path Forward
After moving from Houston, Texas to Lynn, Cohen encountered Dr. Azar and began navigating the transition from pediatric to adult care. Historically, many patients with sickle cell disease did not survive into adulthood, resulting in limited resources for adult hematology until recent years. Dr. Azar emphasized the importance of reframing the narrative around the disease. Research indicates that with proper guidance and hydration, patients can participate in physical activities.
Cohen’s journey includes completing the Boston Athletic Association (B.A.A.) half marathon last spring, an achievement that inspired others in the sickle cell community. “She is a hero to her community,” Dr. Azar remarked, noting that her success encourages others to believe they can accomplish similar feats.
Reflecting on her relationship with Dr. Azar, Cohen expressed profound gratitude. “He is honestly the best doctor I’ve ever had. The level of intention he has for us in care means so much,” she said, highlighting the empathy often lacking in healthcare experiences for sickle cell patients.
Cohen has faced discrimination in the healthcare system, recounting instances where providers dismissed her pain as drug-seeking behavior rather than recognizing her legitimate medical condition. “It’s really gratifying that a group of people see us and treat us like people,” she noted.
Chasing Dreams
Encouraged by Dr. Azar and her trainer, Jen Miramontes, Cohen is pursuing her childhood dream of completing the New York City Marathon. “It’s so funny; I hate running,” she admitted. Miramontes, who crafted a tailored training plan for Cohen, believes her participation in the marathon is a significant milestone for the sickle cell community. “I’m excited to represent the sickle cell community, not only in Boston but all over the world,” Cohen stated. “I don’t want to be the only person who does this.”
Cohen’s story is a powerful testament to resilience and advocacy, as she prepares to cross the finish line of the New York City Marathon, inspiring others to overcome their challenges and live life to the fullest.
