Nurse, clinical research trial participant
Her story: When Juliana Voss, R.N., M.S.N., was a child, she dreamed of being a nurse. But as she grew up, her sickle cell anemia disrupted her plans – in a big way. “I was always sick,” she recalled. She found herself in the hospital 7-8 times a year, each visit often lasting 1-2 weeks. “It was brutal,” she said. She went to college and became a certified public accountant, but her pain crises continued. Then 12 years ago, her fortunes turned. Voss participated in a clinical research trial at NIH that enabled her to receive hematopoietic stem cells from her older sister Francisca, who matched her blood type. The procedure took six weeks, and it took another few years to feel its full effects. “It completely changed my life,” Voss said. Now, she works as a registered nurse in Bethesda. During the week, Voss analyzes data as a nurse informatics specialist. Every other weekend, she cares for patients, including those living with sickle cell disease.
Her brother’s gift: “I am one of seven children, but only my younger brother Paul and I had sickle cell disease,” Voss said. Both were planning for the NIH trial, and “we promised that no matter what, we’re doing this together.” Then, they would pursue their dreams. Paul was a pharmacist and would become a professor. Voss would become a nurse. Tragically, Paul passed away from a severe pain crisis before the trial. A week later a college reached out with an offer for him to teach. In his honor, Voss went back to school to become a nurse a week after her transplant.
How she succeeded: During the day, Voss took classes. At night, she returned to the hospital for treatment. “It took a couple of years for me to notice a difference,” she said. “By the time I graduated, I felt a huge difference. It was like day and night,” she said. “By then, I was practicing,” she explained. When she walked into the hospital to work where she used to receive treatment, several nurses met her with awe. “Is this the Juliana I took care of many years ago?” they asked. Voss beamed. “They were my inspiration,” she said.
Why she’s paying it forward: “When my sister donated 17 bags of stem cells for my transplant, she became my hero,” Voss said. “I owe her my life.” Now Voss is giving back to patients, whose “jaws drop” when they hear her story. “They can’t believe they have a nurse who’s been through what they are going through and who truly understands their pain,” she said. “My experience has made me a better nurse.”
Her advice to others with sickle cell disease: “Find something you love doing because it can ease stress and help take your mind off pain,” she said. “Sickle cell and stress don’t mix.”
Her vision for the future: “My hope for this research is that it’s no longer just a trial, but a cure covered by health insurance,” Voss said.