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Saturday December 20, 2014

A Sickle Cell Survivor, Nursing Student Gives Hope to Others Fighting the Disease

A Sickle Cell Survivor, Nursing Student Gives Hope to Others Fighting the Disease

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Stephenie Carter, who had stroke at 3, is thriving at 32

Stephenie Carter
Photo: Courtesy Stephenie Carter
From age 3, when she had a stroke, until age 24, Stephenie Carter, had a blood transfusion every three weeks.

'I know what it’s like to have an illness, to have good days and bad days.  I can say to patients, this is what it looks like: I am the other side of what they’re experiencing .'
– Stephenie Carter

If you’ve spent much of your youth in the hospital, have needed to stick yourself with needles from an early age and know that at any time you may suffer a medical crisis, then that’s normal life to you.

This is the reality for Stephenie Carter, who holds both bachelor’s and master’s degrees from Rutgers University-Newark and is a first-year student at the Rutgers School of Nursing.

Carter, now 32, has sickle cell disease, a hereditary blood disorder that alters the shape and movement of red blood cells. The disease, which can be fatal, affects millions worldwide and about one in 500 African-American births. Though the illness has, inevitably, defined much of Carter’s life, she’s refused to let it define her. Thanks to a combination of supportive parents, compassionate caregivers and a buoyant spirit marked by a well-honed sense of irony and humor, she enjoys a full, engaged life, rich in accomplishments. “I simply choose to focus on my abilities, rather than my disabilities,” she says. 

Originally from Orange, N.J., Carter suffered a stroke at the age 3. While at church, her mother noticed that her mouth had slightly twisted and immediately brought her to the hospital. From then until 24, she had a blood transfusion every three weeks. Despite the residual effects of the stroke (she still uses her left hand for everything but writing); surgeries (both her spleen and gallbladder have been removed); and an arduous medication regime (including Desferal, for reducing iron overload, which for several years required being hooked up to a machine eight hours a night), she managed to have a somewhat normal, playful childhood.

She attributes this in part to her mother, who, she says, “never allowed me to feel sorry for myself, or to give up. This is a terminal disease. I was born with this. It’s not going anywhere.” Carter also developed a close relationship with Susan La Bagnara, an advanced practice nurse for University Hospital’s pediatric hematology/sickle cell program. “I’ve known Susan since I was 3,” says Carter. “She’s more than a nurse to me. She sees me as a whole person. She’s not going to sugarcoat, say, what the side effects of a new treatment are. I’ve been told lots of times that I wasn’t going to make it to the age I am now. You want to be around people, like Susan, who are really hopeful.”

Carter is also quick to note that illness has given her experiences she regards as blessings: a trip to Disney World through the Make-a-Wish Foundation, TV appearances on the Children’s Miracle Network and the chance to educate other people about sickle cell disease.

Carter transferred as a junior to Rutgers, where she double-majored in sociology and criminal justice and later received her master’s in public administration. As a student, she was a resident assistant, an orientation workshop leader coordinator, graduate assistant to the late Dean Barbara Moore and a Rutgers Ambassador for the Office of the Chancellor under the direction of Chancellor Marcia Brown. She was also co-assistant director of Unity Theatre (a program of the Health Promotion Division) and spent a spring break working with Habitat for Humanity in New Orleans. This is in addition to her ongoing fundraising and awareness-building work for the sickle cell community. She is active with the Sickle Cell Association and frequently speaks on the topic to the public and to health care professionals. Upon graduation, she was granted a dean of students award for outstanding leadership and service.

Stephenie Carter
Photo: Courtesy Stephenie Carter
Carter, who holds both bachelor’s and master’s degrees from Rutgers-Newark, is a first-year student at the Rutgers School of Nursing.
Carter chose to pursue nursing because she feels that’s where she can make a difference. In the hospital “your family may not always be there, but your nurse is always there,” she says. “And I know what it’s like to have an illness, to have good days and bad days. I can say to patients, 'This is what it looks like.' I am the other side of what they’re experiencing.” 

According to La Bagnara, the nurse, such mentoring already happens when Carter helps run support groups, serves as a chaperone at summer camp programs and comes to the clinic as a patient. “Stephenie is a terrific role model for the other patients, particularly the young girls,” La Bagnara says. “When they’re feeling down, she can help find the bright side. And it’s powerful for them to see how she has been successful, as well as being compliant with treatments – taking medication and following the protocols. They see that having a successful future is possible.”

The academic degrees have been hard-won, says Carter, given delays – including one entire semester due to hospitalizations. Yet Rutgers has been pivotal in helping her find her path.. “For me, Rutgers has been a place where my dreams have been shaped, and where I’ve been supported, inspired and able to thrive.” 

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