They are doctor and patient. But in a lifelong battle against sickle cell disease, they have become so much more.
Bre’Asia K. Demery considers Dr. Paulette Bryant her No. 1 supporter. A friend. A mentor who has helped her cope, physically and emotionally, with this chronic disease. “She’s the person who, whatever I go through, will be in my corner,” Bre’Asia said.
Bryant considers Bre’Asia an inspiration to anyone facing sickle cell or any other disease. “I‘m absolutely in awe of her,” Bryant said. “She thrives having this thorn. She overcomes.” She also considers Bre’Asia her fashion role model. “I tell you, this girl can dress,” Bryant said, laughing at her own lack of sartorial prowess. “I’d ask her, ‘What can I do?’ and she’d say, this, that and the other.”
Together again one recent afternoon at the St. Jude Affiliate Clinic at Novant Health Hemby Children’s Hospital in Charlotte, they embraced. Much has changed since they met 16 years ago. Bre’Asia was 4 years old, beginning to navigate life with a chronic disease. Now she is 20, a junior at Johnson C. Smith University in Charlotte, strong enough to handle the two or three bouts of excruciating pain that strike each year without warning. For some patients, sickle cell and the unexpected bouts of pain can lead to depression. Not Bre’Asia.
Bryant, 63, a Harvard Medical School graduate and retired U.S. Navy captain, met Bre’Asia soon after arriving at Novant Health after practicing at the Naval Medical Center in Portsmouth, Virginia. Bryant, a hematologist/oncologist, devoted 17 years to expanding the sickle cell program at the St. Jude Affiliate Clinic before retiring in March to spend more time with her mother. Mission accomplished: The St. Jude Affiliate Clinic, in addition to caring for children and adolescents with cancer, sees 200 sickle cell patients each year.
Here they are, reunited at the Affiliate Clinic, located across from Novant Health Presbyterian Medical Center. Between “Welcome back!” hugs from staff members and patients, they are here to tell their story. Years after the onset of disease, their bond endures.
‘She’s got perseverance’
Bre’Asia was one week old when a normal infant screening detected sickle cell disease. This red blood cell disorder is inherited from a parent. Some 200,000 cases are diagnosed each year in the United States. It strikes males and females equally, but disproportionately affects African Americans. There is no cure. A patient must endure a lifetime of symptoms that can include pain, anemia, bacterial infection, swelling of the hands and feet and, in some cases, a stroke. While science is making progress, sickle cell disease still takes its toll. From 1979 to 2017, the median age at death rose from 28 to 43, according to the Centers for Disease Control and Prevention. Death often comes from pneumonia or complications from organ failure.
Bre’Asia was 10 when the immensity of her challenge really sank in. One day at Sugar Creek Charter School, Bre’Asia passed out from pain and dizziness and was rushed by ambulance to Hemby. It was bad enough that she was sick. Now all the kids at school knew. In her essay for the Paulette C. Bryant M.D. Scholarship (see accompanying story), Bre’Asia recalled something else about sickle cell. The disease contributed to her slight stature, which led to her being bullied.
As soon as her patients were old enough to understand, Bryant told them straight up: It is up to you how you deal with the disease.
“Sickle cell patients make a choice of being positive every day in spite of the pain,” she says. “That’s what makes them amazing.”
That includes Bre’Asia, Bryant said.
“She’s got perseverance.”
‘Sickle cell does not define me’
Bre’Asia has had no choice but to persevere.
She is the youngest of five children from Manning, South Carolina. Her father, Bernard, lives with a pacemaker. Her mother, Coretta, is a breast cancer survivor. During the several months that Bre’Asia was a patient at Hemby, seriously ill with meningitis, she made a request of Bryant. “Can you help me celebrate my mom’s birthday?” Vanilla cake and balloons appeared.
Early on, Bryant told Bre’Asia what she needed to do. Bre’Asia heard every word. She drinks plenty of water (Gatorade works, too), avoids stress, stays warm and maintains an active lifestyle while making sure to get her rest. She sees her doctor at the St. Jude Affiliate Clinic every six months. She takes vitamin D for bone health. She is careful to avoid catching something from someone else. She has a T-shirt that warns “If you can read this, you’re too close.”
Still, she suffers from anemia, which causes fatigue, pale skin and a yellowish tinge in the whites of her eyes. Two or three times a year, pain comes out of nowhere, primarily striking her head and back. This is sickle cell’s calling card. Bre’Asia has been hospitalized several times to manage the pain. She takes pain medicine as needed. A heating pad helps. So does her faith.
“I’m big on Christianity,” she said. “I pray all the time for peace, wisdom, common sense. Sickle cell does not define me or stop me from doing the things I want to accomplish. I think I have something greater than I have now.”
That “something greater” includes helping others face illness and adversity. This is Bre’Asia’s calling, what she believes is her destiny. A soft voice cannot hide her resolve.
The St. Jude Affiliate Clinic at Novant Health Hemby Children’s Hospital is one of eight nationwide affiliated with St. Jude Children’s Research Hospital in Memphis. The affiliation allows Bre’Asia and other Charlotte patients to participate in clinical research trials to help physicians learn more about how best to treat cancer and other childhood diseases.
As a psychology major, she will graduate in 2024, then intends to pursue an advanced degree in psychology or social work. Being the first recipient of the Paulette C. Bryant M.D. Scholarship will help her achieve that goal.
And after that? Bre’Asia wants to get married, have children and become a grief counselor with the FBI. Time might change her career path, she says, but not the road that lies ahead. There is a doctor to stay in touch with. People to help. And, sickle cell disease be darned, a life to live.
Scholarship helps recipients follow their dream
Bre’Asia K. Demery has received the Paulette C. Bryant M.D. Scholarship. The $500 award goes to someone with sickle cell disease to further their higher education in pursuit of their career dreams. It is named for Dr. Paulette Bryant, a pediatric hematologist/oncologist who helped build the sickle cell program at the St. Jude Affiliate Clinic at Novant Health Hemby Children’s Hospital in Charlotte. She retired in March.
Rather than a retirement gift, Bryant asked that something be done for kids with sickle cell. Bryant’s colleagues, Drs. Joanne McManaman and Jessica Bell, came up with the scholarship idea.
“Bre’Asia embodies the purpose of this scholarship,” Bryant said. “She has a certain grace and presence, never complains about having sickle cell and doesn’t let it define her.”
In her essay application for the award, Bre’Asia wrote: “Today I am 20 years old and although I still struggle with sickle cell disease, I have found that the experience has taught me empathy and compassion. I never hesitate to help others because I understand what it is like to struggle and experience pain.”
