Partnerships, Patient-driven Research, Posters, and Poems
My first ACR meeting… balancing patient advocacy, personal experience and research
The first word that came into mind when I walked into the Georgia World Congress Center was…HUGE! This was a very large professional meeting, with a look that ranged between Disney Landesque drug company exhibits designed to mingle, sell, entertain, and sometimes feed us, and academic-style, football field-sized poster display areas to share research.
There was a mix of people too: patients, advocates, drug reps, physicians and all manner of researchers. In the middle of all this, I found the RPF booth, nestled in a corner next to the US Pain Foundation and about five steps from the Arthritis Foundation. Once I had helped to carry pamphlets and set up our booth, I headed over to the poster area to locate where our posters would be displayed. I was both proud and excited to be a part of RPF and to also represent the Mayo Clinic, where I work as a behavioral scientist.
It’s been about five years since I was diagnosed with Rheumatoid Arthritis and felt like somebody had flipped my life story upside down. And five years since I had first sent an email to Kelly O’Neill, RA Warrior and RPF founder to thank her for her tireless work on behalf of all people diagnosed with RA. Being a part of this meeting as both a patient advocate and a researcher meant I was once again the one in control of my own script and I was determined to do some good, make a difference and be proud of the research skills I had sacrificed and worked years to grow and develop.
The best part of all of it, though, was that I wasn’t doing it alone, but with a cadre of colleagues, friends and fellow RA buddies. Sometimes living with a chronic illness can be a lonely experience, but when you get involved in advocacy and patient-driven research, the loneliness lifts away and suddenly you find yourself surrounded with great friends, new perspectives and LOTS of people who understand.
I felt honored to be able to present our poster: ‘It Felt Like I Was Walking on Rocks: Patients Share First Symptoms of Rheumatoid Arthritis’ which share the perspectives of more than 700 people who responded to social media posted by RPF asking them to describe their first symptoms of RA. The poster highlighted the fact that 83% of reported first symptoms outside their hands, with many reporting first symptoms that didn’t even include joints. The hope with this poster, was to show ACR members the diversity of first symptoms of the disease, so that when patients present with non-classical symptoms, their chances of an accurate and timely diagnosis will be improved. This type of patient-driven research has scientific merit, clinical relevance and can help to improve the lives of many of us who live with RA. I was so inspired by you all, that my next project will be to use your words to write a series of found poems highlighting the experience of RA in your words!
In addition to visiting with other advocates, learning about the many diseases treated by rheumatologists, enjoying free lattes and meeting several of our industry partners, like Scipher Medicine, I also availed myself of the plethora of research conducted on behalf of patients like us from investigators all across the globe. I believe our presence at the meeting made a difference as I saw many of our fellow RPF members interact with other patients, researchers and physicians to educate and share their own stories. I did see so many people who valued the participation of patients at this meeting; and while that wasn’t a universal experience, it was the prevailing one for me; and that fact alone, gave me hope for the future.
Finally, on a most personal note, the ACR meeting was an opportunity to connect with other members of the RPF board. While we meet regularly by phone, I had only met them in person one other time. These are all amazing people with their own stories to tell who represent wide ranges of the disease and a singular desire to create a world where no one suffers from Rheumatoid Disease. I am so grateful for my first ACR experience.