BMC patient Ingrid Ortiz was diagnosed with sickle cell disease (SCD) when she was born. Up until she was 8 years old, Ingrid was treated at BMC and returned as an adult, reconnecting with Dr. Lillian McMahon at BMC's Center of Excellence for Sickle Cell Disease — the very same doctor she had when she was a baby.
"Dr. McMahon is a great doctor. I feel like I can ask and talk to her about anything," says Ingrid.
SCD is a genetic disease that causes your body to produce abnormally shaped red blood cells, which can cause pain and other serious problems, such as infection, acute chest syndrome, and stroke.
For Ingrid, these appointments didn't make sense until she was older. "I didn't know I had any medical problems or an illness until I was in middle school. I started questioning why I had to take medication every day, why I had to drink more fluids than other people, and why I couldn't stay in the sun too long," she says.
This became clearer to her when she was 15 years old on vacation with her family. While some SCD patients have pain when they are younger, it wasn't until this moment when Ingrid had her first pain crisis. After this first episode, the pain started to increase, from a few times a month to multiple times a week. This pain often resulted in hospitalization.
Advocating for yourself and your care is so important, especially for SCD
"At BMC, I am able to ask questions and learn more," she says. "If there is an infusion or treatment I want to do, I research it and bring it to my care team. Advocating for yourself and your care is so important, especially for SCD."