Living with Sickle Cell Disease
While June 19 is World Sickle Cell Day, Capri lives with sickle cell disease (SCD) every day. In 2016, she advocated for youth like her by representing Levine Children’s Hospital at Speak Now for Kids Family Advocacy Day. Below is an update from Capri.
In 2017, I graduated high school and went to college at North Carolina Agricultural and Technical State University to study nursing. I’m currently a rising senior and have had so many great experiences in college. My passion for nursing has grown tremendously as I matriculate through my program. I’ve maintained my honors status in college, so I guess I can say I have excelled. I was recently elected as president of the nursing student association chapter at my school, and I look forward to serving the nursing community this fall.
Sickle cell disease predominantly affects minorities. I feel it’s not highlighted as much as it should be to the world. While I feel more people are aware of SCD, there is always room for improvement.
I want SCD to have more support, because it’s a disease you can’t see. Many patients like me can look great but feel horrible. There have been times in my life when I was happy and listening to music on my way to the hospital, but when I arrived, medical staff rapidly worked to put me on oxygen because my level was so low.
It’s important those of us with SCD have more therapeutic outlets. Opioids are the main therapeutic regimen to address the pain we suffer. But I hate the side effects of the opioids. With proper support within the medical field, I believe we can research alternative therapies to treat the disease and ultimately cure it.
Fortunately, my family is very supportive. My mom is always there when I’m sick—whether it’s at the hospital or at home. It can be difficult juggling unexpected hospital stays, doctor appointments, my personal life, and school, but my mom is there for me every step of the way.
Medicaid has played a pivotal role throughout my life. Without Medicaid, I wouldn’t be able to afford several of the medications I take, or the numerous doctor appointments and hospital stays I’ve had.
Even as a young adult (I’m 21 years old), I continue to receive care from Levine Children’s Hospital. My amazing team monitors my health and helps me navigate the impact of SCD on my body. They’re also preparing me for the transition into adult care.
There are two hematologists whom I’m grateful to have on my medical team. Dr. McMahon has been my hematologist since I was in elementary school, and he has taught me so much and always compliments me on my fashion—from hair to shoes. My other hematologist, Dr. Harrell, is an African American woman. It means a lot having someone who looks like me in such a prestigious role.
During the COVID-19 pandemic, I’ve continued follow-up care with my doctors. Some appointments have been virtual, and others have been in-person where I’m the only patient in the building. I do limit the number of times I leave home—only going outside on a need basis. When I’m out, I always wear a face mask and maintain at least six feet apart from other people. I also use hand-sanitizer religiously. I don’t have people over like I used to, because you can never know who has been exposed to what.
I have absolute confidence that Levine Children’s will continue providing excellent care for me, while also implementing necessary actions to prevent me from contracting COVID-19. I feel this pandemic will lead to new actions and policies that can protect families and patients from contracting infections in the future.
Learn more about Capri from when she participated at 2016 Speak Now for Kids Family Advocacy Day.