PRMRP Consumer Peer Reviewer
Approximately one in four adults in the U.S. experiences arthritis, or inflammation of the joints. Among Service Members and Veterans, this figure can reach as high as one in three. While some may associate arthritis only with the trials of aging, Stephanie Livingston knows better. At age 12, what appeared to be a lingering injury from playing competitive softball led to her being diagnosed with juvenile rheumatoid arthritis (now called juvenile idiopathic arthritis). While there are multiple arthritis conditions and diseases, rheumatoid (autoimmune) or idiopathic arthritis has no clear cause or origin. Her disease rapidly progressed and altered her day-to-day activities. Instead of continuing with athletics, Stephanie found herself regularly visiting a rheumatologist for monthly infusion treatments to manage her pain, swelling, and lack of mobility. Through the Arthritis Foundation, she established a connection to a community of patients and advocates outside of her regular doctor visits. Stephanie learned more about her disease and how to manage her arthritis through these passionate advocates, of whom she is now a leader.
Stephanie now steers her passion wholeheartedly back to the community that supported her. She currently serves as the Advocacy Director for the Arthritis Foundation, where she manages their volunteer efforts and coordinates a grassroots advocacy strategy. In her role, she helps patients find their voice and lean into their experiences to help improve patient care, saying “Yes!” to opportunities to do so. For example, she works with patients who were nominated as consumer peer reviewers for the Peer Reviewed Medical Research Program (PRMRP). Arthritis, Osteoarthritis, and/or Rheumatoid Arthritis have been PRMRP Topic Areas since 2012. After a year of assisting others with training for PRMRP peer review, Stephanie herself began participating as a consumer peer reviewer in 2020. She praised the training videos, webinars, and other documents used to make an easy onboarding process for new consumer peer reviewers. As an arthritis patient since childhood, Stephanie enjoyed sharing her own knowledge and experiences in the evaluation of research applications and using her voice to identify potential impacts for patients. Stephanie also greatly appreciated the feeling of connection to the broader research community and working with researchers focused on improving the lives of people with arthritis and other autoimmune conditions. She described the experience as “a wonderful way to ease into the scientific research side of arthritis.”
In addition to her first diagnosis with juvenile arthritis, Stephanie also lives with fibromyalgia and osteoarthritis. She works hard to coordinate her care and manage the treatments that she needs while learning more through her activities with the Arthritis Foundation and the PRMRP. When she’s not participating in research or encouraging people to find their “Yes!” with the Arthritis Foundation, Stephanie can be found exploring the Washington, D.C. and northern Virginia areas, trying new restaurants, and collecting license plates.
Last updated Thursday, May 26, 2022