The Importance of Patient-Doctor Relationships With Sickle Cell Disease

Over the years, I have developed strong relationships with various hematologists, which has been beneficial in dealing with insurance companies, emergency room doctors, and even teachers. As a child, I had a wonderful bond with my pediatric hematologist and her nurse. They always made me feel seen and prioritized my health. They understood that sickle cell disease is not limited to specific hours and often went above and beyond their duties. They even provided me with their personal phone numbers and interrupted their Thanksgiving dinner to ensure I received proper care during a crisis over the holidays. Dr. Uma S. Subramanian and Nurse Patricia Bailey taught me and my family everything we needed to know about my illness and emphasized the importance of listening to my body while not letting it limit my goals.

One experience I am most grateful for is the summer camp they referred me to, sponsored by the Sickle Cell Disease Association of Illinois. This camp was unique because every camper had sickle cell disease, including the counselors. They had a medical cabin with hematologists and nurses specialized in our illness, ensuring we received our medications and necessary medical care. Attending this camp allowed me to meet others who shared my disease, something I had always longed for. It not only provided a sense of normalcy but also lifelong friendships.

As I transitioned from a child to a teenager and then an adult, I realized the severity of my illness and had to create new relationships with doctors who didn't know me as well. Although it was discouraging not to be followed by my original team, I had to attend appointments and build new bonds. Showing unfamiliar emergency facilities that I was under the care of a hematologist made my visits during a pain crisis smoother. Having a care team on my side made advocating for satisfactory care easier. When I was accepted into Florida A&M University, I researched nearby hematologists and, with Nurse Bailey's help, chose Dr. Janice Lawson. She exceeded my expectations with her compassion, consideration, and willingness to accommodate my college schedule. She worked with me to prevent pain from interrupting my classes and even arranged appointments for IV fluids or pain medication during stressful times. She collaborated with my doctor in Chicago for the most effective plan of care when hospitalized.

I am grateful for these amazing providers who took the time to get to know me as a person, not only as a patient. They went above and beyond to ensure my comfort and listened to my concerns. They even volunteered to educate teachers, professors, and classmates about sickle cell disease on my behalf. This made me feel like more than just a name or number. I encourage anyone affected by sickle cell disease to develop a strong relationship with their hematologist as it makes a significant difference in emergencies and times of need. I am thankful for the passion and support of my hematology teams, who prioritize not only my health but also my success in all areas of life.