When reflecting on the past year living with sickle cell disease (SCD), 38-year-old Massiel Rivera doesn't pretend it's been easy. SCD is not only painful, but it also causes a lack of blood and oxygen to the joints, causing them to break down. "Everything is always a little complicated with sickle cell," explains Massiel. "I had my left hip replaced in May, and now I have to get the right one done. And when it's cold and windy, I feel more pain in my bones."
Despite these challenges, Massiel feels hopeful about the future. She explains that her positivity is genuine, stemming from getting good care at BMC’s Center of Excellence in Sickle Cell Disease and being a mother to 13-year-old Jared and 9-year-old Jariel. The older her sons get, the more they have become in tune with Massiel’s disease, offering massages and asking, “What else do you need, Mami?”
Massiel especially appreciates the comprehensive and coordinated care she gets from hematologist Dr. Lillian McMahon and nurse practitioner Charlene Sylvestre. “They are very active in my care and always answer me right away,” she says. “They offer me a lot of support and don’t treat me like a patient.” She also values her team’s dedication to discovering new treatments: “BMC is doing a lot to find cures and better medications, and I believe they will find something in the future that will make the lives of sickle cell patients easier. That’s why I always participate in research!”
Though Massiel has hope for the future, she lives in the moment, thanks to Jared and Jariel. "I have two children who depend on me, so it's not an option for me to sit around all day," she laughs. "I don't let my disease get me down. I take advantage of the days I feel good and have energy by going out and enjoying myself. And the days I don't feel well, I get up and get out anyways. I want my sons to see that their mother is active and strong."
Our Center of Excellence in Sickle Cell Disease offers highly personalized care tailored to each patient, including transformative gene therapies.