RPF asked volunteers to share their experiences of volunteering at the 2013 scientific meeting of the American College of Rheumatology. Today we present three perspectives, with more to come soon. Common themes: excitement about RPF's progress, excitement of meeting fellow members, and hope for the future.
Fellow warriors educating about RA
By Melinda Hansen
I volunteered to help staff the RPF exhibit at ACR, the national rheumatology conference. It was an awesome experience. I had a chance to meet and talk with doctors, nurses, patients, researchers, and pharmacists. One of the highlights was meeting fellow RA warriors and people from other patient advocacy associations.
Many visitors to the exhibit said that they had been looking for a place to refer patients for information and support, and were happy to learn of the websites for RPF and RA Warrior. There was great interest in the patient education materials created by RPF, and many requested copies.
Kelly and Elizabeth Riggs, along with Dr. Jeffrey Curtis and Theresa Brady, gave a wonderful presentation at a session about incorporating the patient point of view into clinical practice: working with patients as partners, evaluating how each individual patient sees their disease, sharing decision making, educating patients on coping with the often-complicated range of symptoms and treatments.
This session was at the very end of the day on the last full day of the conference. Not only was it very well attended, but also when the session ran over, almost everyone stayed late till the discussion was complete. Usually people start leaving before the end, but not this time, a major compliment to all the speakers. Kelly, but the way, is a rock star! She has moved and inspired and educated so many. While sitting at the RPF exhibit, everyone wanted to say hello and meet the person who has written so honestly and so insightfully about RA.
RPF had two poster presentations. They both describe surveys of RA patients and discuss aspects of the disease that are often misunderstood, or not well-evaluated with current tools. One of the posters discusses how, although most RA patients are encouraged to increase activity and exercise, that this can, for some, cause worsening of symptoms and decreased ability to function. The other poster discusses many misconceptions about RA, including the concept of morning stiffness, which for many is not the pattern that symptoms follow; whether you can have joint inflammation without swelling (you can!); and in which joints RA can manifest itself (all!).
If you’re not in the medical profession, you may not know what a huge honor it is to have a research poster accepted for inclusion in this conference and to be invited to speak at one of the sessions. We heard from the audience that patients have had a much larger presence at the European version of ACR (EULAR), but that ACR has traditionally not made a huge place for patient involvement. So yay, Kelly and RPF, out there on the frontlines helping patients to be heard!
Presenting the Patient Voice at ACR 2013
By Elizabeth Riggs
The best thing about ACR13 was getting to meet and befriend – in person – people I had only met online! All of them were just a great as I had imagined. We shared stories of onsets; medical diagnosis and treatment processes; medications and side effects; of docs who "get it," and those who don't. We stopped doctors passing by and told them about RPF. Nearly all took one of our brochures. Unfortunately, not all could (or would) stay and talk with us. The ones who did, however, were intrigued. Many were very nice and paid careful attention to the message of the volunteers and the literature.
On Tuesday, Kelly presented her two (2!) abstracts at the poster session. Then there was the educational session:
- Teresa J. Brady, PhD, from the CDC presented "Supporting Self-management: Easier and Harder Than You Think"
- Jeffrey R. Curtis, MD, MPH, MS presented "Effectively Incorporating Patient Reported Outcomes Into Patient Consultations"
- Elizabeth Riggs, PhD, RN [that's me!] presented "Overcoming Obstacles to Shared Decision Making"
- Kelly Young, [the RAWarrior, herself!] presented "Engaging Patients as Partners" (Of the 4 presentations, I thought Kelly's was the best of a really great lot!)
Having to leave was so hard. But, I have new friends to correspond with, a new friend here in my own town to hang with some, and many, many new ideas about the diagnosis and treatment of rheumatoid disease! God willing, I'll be along again next year in Boston!
Glad for the opportunity to make a difference
By Norma Martinez
At ACR, I saw firsthand the amazing things that the Rheumatoid Patient Foundation has accomplished, so far! It was empowering and helped me realized that so many others really do understand and care about our pain and struggles. We are not alone and there really is hope!
It was wonderful meeting Dana and the others. Thank you for all the time you put in and hard work you do! I wish I could have spent more time volunteering. Thank you (the volunteers) and Kelly for giving me the opportunity. I'll never forget it!