As a research scientist at the Children’s Hospital of Philadelphia, Sara King-Dowling has a lot of experience collecting and analyzing data from the perspective of an objective investigator. She earned her PhD in Kinesiology (exercise science), and she’s interested in how physical activity can promote health in kids as they’re developing. Yet in a meaningful twist, this fall Sara will straddle the identity of both patient and researcher as she shares her personal story and experiences of living with ankylosing spondylitis (AS) at the ACR Convergence 2022, the annual meeting of the American College of Rheumatology.
At the age of 22, Sara began experiencing joint pain and stiffness that made it almost impossible for her to partake in the activities she enjoyed. “I had completely lost my identity as an athlete,” recalls Sara.
How Exercise Has Helped in Her Disease Journey
Sara’s ACR poster “Exercise as a Supportive Treatment for my Ankylosing Spondylitis” describes how she has been able to steer clear of symptoms by maintaining a regular exercise regimen in addition to adhering to her treatment of a monthly biologic. Yet she also acknowledges the fact that it’s not always easy to move when coping with the symptoms of a rheumatic diseases. You “experience mobility challenges, but periods of immobility cause increased stiffness and pain,” she notes.
When Sara first started incorporating exercise into her overall treatment plan, she had to find a balance “There was a lot I just couldn’t do or it was too painful to do, [but] I could tell if I stayed still a long amount of time, I felt so much worse.” Ultimately, Sara wasn’t able to move more until she also found a medication that helped manage her symptoms too. “That’s really when I started seeing even more benefits of being active and how it kept me feeling okay,” she says.
For Sara, exercise not only improved her range of motion, muscle strength, and cardiovascular fitness, but it also boosted her mental health. “Exercise clears your mind and makes you feel better about yourself; it’s kind of a compendium of things. I’m a full proponent of exercise. I don’t think the physical aspects should motivate people to exercise as much as the instant gratification of how it makes you feel mentally.”
What Sara Learned – And What You Can Learn Too
Here, we talk with Sara about her experience submitting a patient poster for ACR and what she hopes others will take way from her learnings:
CJ: What was your motivation to submit a patient perspectives poster?
Sara: “One of my biggest motivations was that I wanted to attend an arthritis-focused conference as a patient versus as an academic. I felt really compelled to do this poster to share how much exercise has helped me and I think it could be a really important area for future research as well. […] I wanted to attend as a patient and try and do some networking and make some connections with potential researchers who might want to partner with patients on that type of research on the exercise, physical activity, and arthritis world.”
CJ: What are you most looking forward to at ACR 2022?
Sara: “I’m looking forward to meeting people and learning about research behind some of the medications I’m taking and things that might help me as a patient.”
CJ: What do you hope people will learn from your session?
Sara: “It’s interesting because usually I do posters that have a lot of evidence and a lot of things backing them up and this is to present a personal story or personal experience. I recognize it’s less robust from a research standpoint, but I’m hoping it can spark conversation as to the importance of exercise and physical activity for people with my condition, and [to prompt] rheumatologists on how important it is to counsel patients about activity and keep them moving.”
CJ: Why is it important for patients like you to share your own research at ACR?
Sara: “When I was first diagnosed, I joined Facebook groups…there was a lot of negativity. So, I’m hoping to show someone a positive side and things that can really help, and that it’s not all just ‘doom and gloom.’ I struggled with that when I was first looking for support groups. I felt they were all ‘your life is over now.’ I think when you’re first diagnosed you can wonder ‘will I ever feel better again?’ And I do — I feel great.”
CJ: What did you learn about yourself and your health journey by working on your poster?
Sara: “It’s funny, every time you go through the process of writing your story or your history it brings up the memories of worse times. ‘Oh, I have arthritis’ is not part of my day-to-day thinking because I feel like it’s so well managed…so part of it was a little, I don’t want to say sad, but reflective. I feel very thankful I’ve come a long way. It’s crazy to think how long ago it was now and I realize how lucky I am that I’ve been able to keep it relatively controlled. I feel lucky and I guess a little resilient.”
CJ: Is there any piece of advice you might give someone struggling with chronic illness symptoms?
Sara: “I think it’s just starting somewhere. Exercise doesn’t have to be stereotypically going to the gym. It can be as simple as walking a little bit more in your neighborhood. You can start really small. I think it’s finding what you enjoy and starting from there, and not trying to do it for any other reason other than your own benefits and recognizing what those are for yourself.”
A Step in the Right Direction
Including patient perspectives in the research arena is a huge step forward in elevating patient voices and ensuring that their interests and values are part of the research process. Even more so, when patients share their stories, they may guide others on their healing journeys. Sara shared, “I think it’s important for people to see success stories so that they will have hope that they can also feel better.”
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
King-Dowling S. Exercise as a Supportive Treatment for My Ankylosing Spondylitis [abstract]. Arthritis & Rheumatology. 2022. https://acrabstracts.org/abstract/exercise-as-a-supportive-treatment-for-my-ankylosing-spondylitis/.