St. Jude provided a foundation to help Courtney live her best life

Courtney Davis is on a mission to find and eat the best sushi in New York City.

It’s a simple goal, but one she’s relishing after already accomplishing so much more than she had imagined as a person living with sickle cell disease for 23 years.

Courtney is now working as an investment banker on Wall Street after recently graduating from an Ivy League university. She loves to travel and enjoys seeing musicals on Broadway. She lives with her two best friends from college in a city abuzz with the kind of theater, culture and food she loves. She is living her best life – all while managing sickle cell disease, a debilitating blood disorder she was diagnosed with when she was still in her mother’s womb. 

“Now I can push the limits because my baseline health is so much stronger thanks to the care and guidance I received from St. Jude Children’s Research Hospital,” Courtney said. “It’s incredible. I have been able to exceed so many of my parents’ expectations and my doctors’ expectations.”

Since its founding, St. Jude has been a leader in improving standards of care for people with sickle cell disease. The first grant the research hospital in Memphis ever received was for the study of sickle cell disease in 1958.

Today, St. Jude has one of the largest sickle cell programs in the country, serving about 900 patients a year.

St. Jude began helping Courtney manage symptoms of sickle cell disease when she was 1 year old. Her symptoms echoed those shared by so many other sickle cell patients: severe pain along her arms and legs, and simple colds would set off acute chest pain, weakness and fatigue.

When Courtney was a toddler, doctors told her parents how the disease affects red blood cells, causing them to warp from healthy, round and plump to sickle or banana shapes. That distortion hinders those cells’ ability to supply major organs with oxygen, leading to a host of lifelong health complications, including lung disease, heart disease, kidney disease, stroke, frequent infections and pain crises.  

By the time she was 3, Courtney was taking daily doses of hydroxyurea, which boosts the production of fetal hemoglobin and helps prevent the sickling of red blood cells so that sickle cell patients have fewer crises and debilitating side effects.

Even now, two decades after Courtney began taking it, hydroxyurea is regularly used in maintenance care of patients with sickle cell disease and continues to help her manage her condition. 

Courtney recalls a time she was hospitalized every other month with complications of sickle cell disease.

“Our first stop coming home from vacation used to be St. Jude,” Courtney recalls. “Now, it’s been eight months since I’ve been in a hospital. And I credit St. Jude with improving my baseline health and giving me the toolkit to know exactly how to manage my symptoms.” 

St. Jude has long been a leader in treatment for pediatric sickle cell disease patients, but what happens when pediatric patients age into adult care? 

Care providers witnessed that patients could be overwhelmed by treatment options when they aged into adult care, and they understood part of the treatment for the disease required education about managing care as an adult. 

St. Jude, in partnership with two adult sickle cell centers, Methodist Comprehensive Sickle Cell Center, and the Diggs-Kraus Sickle Cell Center, work together to help patients bridge the gap to adult care by connecting them with care providers and teaching them to make decisions about their care.

Because a smooth and timely transition to adult care can help patients avoid health complications and prevent them from abandoning their care, St. Jude begins preparing patients from age 12 with the skills and planning they will need to manage their disease.  

When the transition to adult care grows closer, a transition case manager helps the patient and family tour the Methodist Comprehensive Sickle Cell Center and the Diggs-Kraus Sickle Cell Center in Memphis. Members of the St. Jude treatment team participate in the patient’s first few adult-care visits to offer comfort in the new care environment, and the adult-care physicians visit St. Jude and meet the patients in clinic before their transfer to adult care. Both St. Jude and the adult-care centers educate the patient about the disease, possible health issues and treatment options, all with the goal of helping the patients take responsibility for their health.

Courtney’s experience shows that these efforts can empower patients and give them a great foundation for maintaining their health and minimizing hospitalizations.

“St. Jude educated me about my disease and how to take care of myself, about what medications work, about what medications don’t. To have that kind of agency in my care is huge,” Courtney said.