Growing up in the Dominican Republic, Massiel Rivera knew she was different. "I was always tired and had pains in my bones. If I swam at the beach too long, I'd have to go to the hospital." As a child, Massiel didn't realize she had sickle cell disease (SCD) and didn't ask questions.
After riding her bike one day, 10-year-old Massiel got a headache so unbearable that she lost consciousness. She woke up in the hospital 5 days later to find out she had a skull fracture that had become infected and required brain surgery. "The worst part wasn't the surgery, it was that my head was shaved. Kids used to call me "goldilocks" because I had such long, blonde hair. I was embarrassed to go back to school."
In 2005 at age 19, Massiel moved to Boston with her family. Though she planned to study and work, the change of seasons was too hard on her body. In 2007, she had intestinal surgery at BMC after having her gallbladder removed. Though the surgery went well, the recovery was hard. "In the DR, my grandmother would bring me whatever I needed, but here, my mom had to work. It was a huge culture shock and I felt very alone."
After a period of depression, Massiel started to get comfortable in her new home and her health stabilized. Now 36 and a mother of two, Massiel continues to seek care at BMC's Center of Excellence in Sickle Cell Disease. "I really like my doctor, Dr. Lillian McMahon. Not only is she super nice and calm, but she also speaks Spanish."
Massiel enjoys spending time outdoors in the summer with her two sons, Jared (11) and Jariel (7). In the winter, she lays low and stays indoors and she makes sure to take precautions when traveling. "Before a flight, I always see Dr. McMahon to make sure everything is fine and to get a blood transfusion. She reminds me to walk around during the flight and drink a lot of water so I don't get dehydrated."
Today, Massiel feels more in control of her disease. "If I need anything, I can call or message her or nurse practitioner Charlene Sylvestre. They are very active in my care and answer me right away. They offer me a lot of support and don't treat me like a patient." Massiel has not had surgery in 15 years.