ACR 2012 – Sharing the Patient Perspective

ACR 2012 – Sharing the Patient Perspective

By Dana Symons

RPF Exhibit Booth at ACR 2012 Annual MeetingThis week, several board members and volunteers from the Rheumatoid Patient Foundation traveled to Washington, DC for the American College of Rheumatology (ACR) Annual Scientific Meeting.  The meeting is held each year over several days with scientific sessions and presentations on the latest news and research in the field of rheumatology.  There is also an Exhibit Hall, where the RPF had booth space to connect with the doctors and other professionals attending the event.  Exhibiting there gave us a chance to increase awareness of the RPF and its mission, share our resources and patient survey findings, and make connections with rheumatologists and others in the industry.  Last year, the RPF exhibited at the ACR meeting for the first time, and it was a phenomenal event.  This year was just as great!

Our wonderful group of volunteers consisted of several individuals in and around the DC area, as well as several people who flew in from across the country.  Our volunteers were among the only rheumatology patients at the event.  This allowed for some really interesting conversations with the attendees, as we were able to share insights and experiences from the patient perspective.  We received a really positive response from those learning about the RPF for the first time, and it was amazing to meet with so many rheumatologists and researchers who share our goals of improving the lives of patients, improving treatment options and searching for a cure.  It was likewise very encouraging to see new research focused on RA, new treatments that have become available, and a strong focus on ways for doctors to improve treatment methods and disease management.

Limited Mobility Suit mimics stiffness and joint restriction of rheumatoid arthritisIn our exhibit booth, we also had something special: the limited mobility suit.  This is a full body suit with numerous Velcro straps that tighten to restrict joint movement and mimic stiffness and limited range of motion caused by RA.  We had two people who volunteered to try on the suit and experience a glimpse of what it’s like to live with limited mobility.  First up was our friend, Brian Reid of W2O Group.  Here’s what he said about the experience:

"It wasn't just that the suit was uncomfortable -- though it was -- it was the way it made the simple things difficult. Getting into and out of a chair was tricky. So was going up and down stairs, or reaching for my phone. But in some ways, I had it easy. The suit came off after less than an hour. And while my movements were restricted, they were restricted by nylon and Velcro, not pain."

Limited Mobility Suit - mimics rheumatoid arthritisOur second volunteer to try on the limited mobility suit was our very own Advisory Board member, Dr. John Davis.  Dr. Davis is a rheumatologist and trying on the suit gave him a unique opportunity to experience a little bit of the loss of functionality that some of his patients may have.  We had Dr. Davis try to sit in a chair with stiff knees and also had him attempt to write with fingers that could not bend well.  He was very gracious in allowing us to test his abilities in the suit, and his movements in many ways resembled those of rheumatoid patients with flaring knees, hands and other joints.

We also got some great video footage of the limited mobility suit in action, so look for that yet to come!

Many thanks to all of our volunteers who helped make our experience at ACR such a success this year!


Click here to view a Photo Gallery from this year's ACR Event!

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