ACR | Rheumatoid Patient Foundation

You are browsing the archive for ACR.

Changing the Landscape of Rheumatoid Disease

November 28, 2016 in Advocacy, Encouragement, Events

The times they are a-changing. Perhaps not as quickly as we'd like, but there are a lot of signs that things are shifting in a positive direction in the field of rheumatology, with a focus on creating better outcomes for people with rheumatoid disease (PRD). Several years ago, the American College of Rheumatology made a big push for what they call "Treat to Target" (T2T). T2T involves setting a treatment goal and modifying the therapy if the goal is not reached -- with the underlying premise that "if you measure it, it will improve." T2T has potential to foster greater collaborations between patients and doctors and to promote the best possible outcomes. Unfortunately, despite ACR guidelines, in many instances PRD are not measured in any manner whatsoever. What would it look like if doctors and patients truly worked together toward common goals? We got a little glimpse...

My favorite session that I attended at this year's ACR Annual Meeting was a session by Dr. Iain McInnes of Glasgow titled "Treatment of Rheumatoid Arthritis When the Patient is Not Well." Arriving a few minutes late, I walked in to hear the words of a passionate (and humorous!) Scottish rheumatologist whose every word resounded with the truth RPF has been proclaiming: this is a systemic disease and each of the "multi-morbidities" (as he called them) must be recognized and treated as a part of the disease itself. Touching on cardiovascular risks, rheumatoid lung disease and even depression -- Dr. McInnes emphasized that each component must be measured, must be addressed-- "or the patient will die". It may sound dramatic, but the truth is that despite advances in treatment, the mortality rate of RD has not changed in recent years. Until we begin screening for and addressing other manifestations of rheumatoid disease, that statistic is not likely to improve.

We had the opportunity to talk with Dr. McInnes after his session and to thank him for speaking on this topic and sharing these simple yet important truths with other rheumatologists. If every rheumatologist practiced the way Dr. McInnes preached, the landscape would be completely different.

There are a lot of great doctors in the U.S. and around the world who do take these things to heart, and we had the opportunity to meet many of them at ACR. While some doctors are still stuck in their own ways or have a hard time implementing proper guidelines due to time constraints and other pressures, we are hearing a powerful message that emphasizes measuring and treating the whole disease and working with the PRD to provide the best possible care and outcomes. It is this message that we want to continue to spread, and we hope to open the conversation so that we can overcome challenges to proper patient care.

Since its inception, RPF has been focused on changing the landscape of Rheumatoid Disease. We want things to look different -- better care, more effective treatments, better awareness, education & understanding -- and one day, a cure. Sometimes it may seem overwhelming, as there is so much work yet to do. But, as with any large-scale project, all we need to do is move one stone at a time. Working together, we can provide a better outlook for PRD, and one stone at a time we will work toward building our vision of a world without Rheumatoid Disease.

Tags: ACR Comments Off on Changing the Landscape of Rheumatoid Disease

by KatieB

ACR 2013 Hot Topics from, One Patient’s Perspective

January 31, 2014 in Patient Input

ACR 2013 Hot Topics, from One Patient’s Perspective

RPF member Melinda Hansen reports on what she learned recently at the American College of Rheumatology scientific meeting. Between posters, exhibits, and actual sessions, there are hundreds of interesting topics covered, and Melinda brings us a summary of several topics important to people living with Rheumatoid Disease.

By Melinda Hansen

So much to be learned at ACR! I attended talks on a wide range of subjects, from an overview of RA treatment in 2013, to safety issues with current therapies, to current osteoporosis management, to inflammatory eye disease, to use of medical marijuana. This is my own subjective view of some of the important issues from this year’s meeting.

“Words That Heal” by Ann Curzan

I had a lovely start to my first day, going to a talk not by a rheumatologist, but by a linguist. She discussed the importance of letting patients tell their stories, in their own words, at their own pace, and said that when the provider frequently interrupts or has eyes glued to a computer screen, patients do not feel they are being heard. She also noted that since the experience of pain is not objectively measurable, clinicians need to trust what patients tell them.

Patient centered research

The growing importance of patient-centered research was mentioned in a number of talks, which is due both to an increasing awareness that yes, the patient is a rather important part of the equation – but also because health care providers are increasingly being expected to demonstrate patient outcomes. This is great for patients, and this is an excellent time for RA patients to provide the patient point of view through greater involvement in research projects.

JAK inhibitors

JAK inhibitors – tofacitinib (Xeljanz) is the only drug in this class currently on the market – are important not because they are better than other drugs, but because they offer an alternative for people who do not get better on current therapies. There are safety issues, however, and the drug is not approved in Europe because of uncertainty about risks versus benefits. The search for new JAK inhibitors targeting different pathways, with fewer adverse responses, was a hot topic and an area in which there is a lot of current research.

Personalized medicine / individualization of treatment

The science of biological research and genetics/genomics is quite complex, but what I am understanding is that as the field of medical genetics continues to progress, it may in the future be possible to better match an individual’s biochemical makeup with the drug most likely to target and treat it.

Triple therapy versus biologic therapy

This topic got huge attention throughout the meeting because of a study presented which compared triple therapy, usually with hydroxychloroquine (Plaquenil), sulfasalazine, and methotrexate to biologic therapy, with a drug like etanercept, usually also given with methotrexate. The question: how to start treatment in a patient newly diagnosed with rheumatoid disease.

The speaker arguing for triple therapy said it is based on a “3-legged stool of value” of efficacy, toxicity (more infections with biologics, for example), and cost; the speaker from Sweden argued that physicians should be look at clinical outcomes, not cost; the speaker from the U.S. counter-argued that that he is living in a dream world! It was a lively discussion.

Other issues with triple therapy were discussed. The biologics are known to have a rapid onset of action, leading to patients obtaining results more quickly. Starting two or more drugs at once means not knowing what is causing any adverse effects that might occur, but when starting step-wise, one at a time, there can be many months of delay, since the triple therapy drugs are often much slower in onset that the biologics.

MISCELLANEOUS NOTES

Newer diagnostic testing

Traditional RA blood tests can be normal even with active RA This causes problems with diagnosis and treatment decisions. The hope is that newer tests such as the Vectra DA (and others being studied), by looking at a much wider range of biomarkers, can provide a better way to monitor disease activity and possibly help guide therapy selection. Vectra representatives emphasized that their test is not meant to be used for initial diagnosis.

Enbrel storage

New information from the makers of Enbrel: although refrigerator storage should still be “standard practice”, Enbrel can be stored at a moderate (but not hot) room temperature for up to 14 days. This is great news when trying to keep the drug cool while traveling. Of course, everyone should check with her / his pharmacist.

Biosimilars

For reasons related to the complexity of biologic drugs, there will not be generic copies, but “biosimilars” for the RA biologic drugs: not identical to the original, but thought to possess the same properties and effects. A biosimilar for the RA drug Infliximab (Remicade) has been approved in Europe, but not yet in the United States. Most seem to think that the biosimilars may make the biologic drugs more affordable, (although this may be less than hoped, especially in this country) but that they will need to be used carefully, with close monitoring for any changes in clinical outcome.

How research studies look at response to treatment

The traditional way to evaluate response to treatment looks at what is called ACR20, ACR50, and ACR70, which means symptoms are 20%, 50% or 70% better. I was happy to see that more researchers are looking at 50% and above, together with clinical symptoms. Although there are days when I would be glad to feel even 20% better, it seems a weak measure of clinical improvement, given that for many of us, our symptoms can vary greatly, even without medication.

Tags: ACR, Research Comments Off on ACR 2013 Hot Topics from, One Patient’s Perspective

by KatieB

Patient-Driven Research, Biomarkers, and More from the ACR Meeting

January 27, 2014 in RPF News

RPF member Andrew Lumpe describes a few highlights from the recent American College of Rheumatology (ACR) annual meeting in San Diego. Andrew is a professor at Seattle Pacific University and a talented statistician who coauthored one of RPF’s recent abstracts published at ACR.

By Andrew Lumpe

Patient-driven research on the impact of physical activity

Dana-Kelly-Andrew-posters I was privileged to spend three wonderful days at the ACR scientific meeting in San Diego. The highlight was a research paper (poster) that a team from RPF presented. The goal of this study was to obtain greater understanding of the nature of RA as experienced by patients. This study involved a patient survey that contained some questions related to consequences of performing certain physical tasks and whether a recovery period followed.

The results of this study suggest an aspect of disease impact on physical functional that is not detected by a common assessment tool used by doctors and researchers, the “HAQ.” Several results of this survey indicate the existence of a “recovery period” after physical activity in people living with rheumatoid disease (RD). The survey data also indicate that patients modify activity to manage consequences of RD. Further investigation is needed to develop ways for patient outcome measures to more accurately assess rheumatoid disease activity.

It was exciting to participate in patient-driven research about RD and the goal is that such efforts will continue to inform clinicians and researchers so that diagnosis and treatment will improve.

More observations from the ACR meeting

In addition to the research paper presentation, I spent time volunteering at the RPF exhibit where I was able to meet other wonderful volunteers and speak to doctors and researchers about the patient perspective and the goals of the RPF. In between shifts working at the exhibit, I attended several excellent sessions and browsed the poster presentations. Below are several keys ideas I gleaned from the conference.

The information age stands to completely transform medicine and drug development.
There is a “patent cliff” coming soon where many current pharmaceutical companies will loose patents on drugs. The question remains about who will develop new drugs after this happens.
Huge online databases may be able to help identify genes connected to diseases (diagnostics) and be used to develop new drugs (therapeutics).
Patient self-assessments of RA symptoms align with rheumatologist assessments about 50-70% of the time. Questions remain about where they disagree.
There are several new RA drugs in phase III clinical trials that may make it to market soon.
The exhibit hall was overwhelming and pharmaceutical companies who sell popular biological medicines spend vast amounts of money on marketing at ACR.
Personalized medicine based on genomics and autoantibody profiles may be in the future.
Biomarkers for various signaling pathways may be used in future drug development.
Autoimmune antibody markers other than Rheumatoid factor (RF) and anti-CCP are being investigated in order to better predict Rheumatoid Arthritis diagnosis.
People with positive RF and Anti-CCP tests tend to have higher levels of inflammatory cytokines.
The lung is being investigated as a possible site of RA initiation.
Systemic inflammation of RA may contribute to depression.

It’s exciting that through the RPF, people actually living with the disease have the opportunity engage with health care professionals at their scientific meeting. Such interaction is critical for advancing research and ensuring the best quality care and treatments.

Read more from Andrew on his blog – click here.

Rheumatoid Awareness Day is just a week away – February 2.

This year patients and organizations across the U.S. and in other countries are observing the second ever awareness day for RD. For updates on RPF sponsored Awareness Day events – click here.

Click here to learn more about Rheumatoid Awareness Day, February 2.

Tags: ACR, Research Comments Off on Patient-Driven Research, Biomarkers, and More from the ACR Meeting

by KatieB

Celebrate #GivingTuesday – Make a Difference with RPF

December 3, 2013 in Advocacy

By Shannon Ragland

Making a difference with the patient voice

In October, for the third year in a row, I was privileged to attend the American College of Rheumatology’s (ACR) annual scientific meeting as a volunteer with the Rheumatoid Patient Foundation (RPF). It is truly an honor to help represent the patient voice for people with Rheumatoid Disease (PRD) alongside a group of amazing volunteers, board members, and RPF’s founder, Kelly Young (a.k.a. RA Warrior) who inspire me so.

Kelly’s call to start the first organization ONLY for Rheumatoid Disease (RD) / Rheumatoid Arthritis (RA) has led to substantial progress in under three years. RPF board member Dana Symons did a great job covering this year’s RPF session on patient engagement and RPF research posters based upon patient-driven research for the RPF blog. Kelly also wrote more about the behind-the-scenes of getting to this point on her own blog. And this week, we're hearing from other members sharing about the reasons they've seen firsthand how important this work is.

RPF_volunteers_exhibit_ACR13

The future is OUR vision and our mission

The Rheumatoid Patient Foundation is a 501-C3 non-profit organization by patients, for patients. Our mission is to improve the lives of people living with Rheumatoid Disease.

Our vision is a world where no one suffers from Rheumatoid Disease.

To achieve this objective, we, the RPF work with patients, physicians, researchers, and other rheumatology stakeholders to address the needs of patients and to create pathways to better care for PRD. There is much more work to be done.

The Rheumatoid Patient Foundation is volunteer-based, and we rely upon the support of members and donors in order to do this important work. We ask for your help today as part of the #GivingTuesday campaign to help us continue to improve the lives of people with Rheumatoid Disease (PRD) in the coming year.

To join our efforts, kindly click here to become a member of RPF.

To make a tax-deductible end of year donation, click here.

Add your voice and help our vision become a reality. Together we CAN do more.

Tags: ACR, Advocacy Comments Off on Celebrate #GivingTuesday – Make a Difference with RPF

by Dana Symons

RPF Presenting Research Findings at ACR 2013 Annual Meeting

October 18, 2013 in Events

American College of Rheumatology Poster Hall

Several Rheumatoid Patient Foundation (RPF) board members and volunteers will be heading to San Diego next week for the 2013 American College of Rheumatology (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Scientific Meeting. In addition to hosting an exhibit in the Exhibit Hall as we have the past two years, we’ll be participating in the scientific meeting.

This year RPF submitted two abstracts, which were accepted by ACR and will be presented during Poster Sessions on Tuesday, October 29. Each day of the meeting, research abstracts are displayed and presented on oversized posters in what is called the Poster Hall. The two abstracts to be presented by RPF contain research data taken from surveys we conducted through our community.

Thanks to all who participated in these surveys, we will be able to present findings on the actual experiences of rheumatoid patients. The data challenge conventional thinking on rheumatoid disease and will open the doors to improved understanding of the patient experience and improved care.

The findings will be presented by RPF Founder and President, Kelly Young, and abstract co-authors. Details for each session are posted below, and the full abstracts can be found on ACR’s website by clicking on the poster title below.

More of RPF at ACR

RPF members will also be speaking at an ARHP session this year on the topic of patient engagement in rheumatology care. For details please read Speaking on Patient Engagement at the ACR / ARHP Annual Meeting.

Poster Title: Patient Survey Challenges Conventional Notions Regarding Symptoms and Experiences Of People Living With Rheumatoid Arthritis
Abstract: #2273
Presenter: Young, Kelly O'Neill BA
Co-Authors: Crowson, Cynthia S. MS; Symons, Dana M. BBA
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

Poster Title: Patient Survey Regarding Utility Of The Health Assessment Questionnaire Reveals An Unrecognized Aspect Of Disease Activity In Rheumatoid Arthritis: Consequences Of Physical Activity

Abstract: #2272
Presenter: Young, Kelly O'Neill BA
Co-Authors: Symons, Dana M. BBA; Lumpe, Andrew T. PhD; Crowson, Cynthia S. MS
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

Tags: ACR, patient-input, Research Comments Off on RPF Presenting Research Findings at ACR 2013 Annual Meeting

by KatieB

Speaking on Patient Engagement at the ACR / ARHP Annual Meeting

August 19, 2013 in Events, Exciting

Each year, the American College of Rheumatology holds an Annual Scientific Meeting, bringing together thousands of rheumatologists and health professionals from around the world. The meeting lasts for several days and involves numerous sessions to present the latest rheumatology research, to enhance learning, and to offer professional development. For the past two years, the Rheumatoid Patient Foundation has had a presence at the ACR Annual Meeting in the Exhibit Hall, where we have been able to share information about our organization and share the patient perspective with conference attendees.

This year in addition to our exhibit booth, RPF Founder Kelly Young, RPF Advisory Board Member Dr. Jeffrey Curtis, and RPF Member and Registered Nurse Elizabeth Riggs, PhD will be speaking together at one of the sessions. They will present along with Theresa Brady of the Centers for Disease Control & Prevention, for a combined session titled: Enhancing Clinical Practice With Patient Engagement and Self-management Support Strategies.

You can view an outline of the session from the ACR Annual Meeting registration brochure:

ACR / ARHP session

This session will provide an opportunity for rheumatology health professionals to learn how to more effectively engage patients in order to improve outcomes. Patient engagement involves utilizing patient-reported outcomes in disease and treatment evaluation, using shared decision making tactics when determining a treatment course, and building partnerships between patients and health care providers to more effectively strive toward disease management goals.

We believe that doctor-patient communication is a key component to rheumatology care and we look forward to the opportunity to present on this topic at the ACR Annual Meeting in October.

Tags: ACR Comments Off on Speaking on Patient Engagement at the ACR / ARHP Annual Meeting

by KatieB

In a Heartbeat

December 20, 2012 in Events, Patient Input

By Becky Rader

I’m glad to share about my experiences from a volunteer perspective at the 2012 American College of Rheumatology (ACR) Annual Scientific Meeting last week. The Rheumatoid Patient Foundation (RPF) needed to present ourselves, speaking to people from all over the world that held jobs from doctors to researchers, who studied effects from sociological to pharmacological. It also was a little overwhelming because there were so many things going on and you want to see and do everything.

This year it was even bigger in scope as far as the venue went. It encompassed two buildings and there were multiple floors. There was minimal directional signage and minimal seating. There was another very significant difference in my attendance this year and that was the intensity of my own disease. Things that I was able to do last year without a second thought required so much more physical and mental effort, bringing to me the realization that I should have taken that stubbornness against getting a cart to use at the venue & checked it at the front door, but that’s another story. Just flying home from there was not without its extreme challenges, like having to board an airplane from the tarmac at O’Hare airport with a knee that was completely useless, feeling so embarrassed about being the last one on the plane that I want to crawl under the seat, but, they were so nice in helping me. They brought a ramp for me to walk up and everyone on the plane played musical seats so they could give me the first seat. I think I managed a record in the airline industry in managing to make both planes over 10 minutes late in leaving, and that was WITH airline assistance. So the question I’m sure you are asking yourself is this: Would I do it again? I can answer that with three words...in a heartbeat.

Having this access to doctors and researchers is unprecedented for us as rheumatology patients. It is important for us to be there because there are doctors and researchers attending who are at the top of their field of study all in the same place, and we have the opportunity to get their buy-in or continued support. Yes, it’s a little like campaigning. For me, this reinforces my belief that we as volunteers for RPF are not just volunteers, but advocates for all Rheumatoid patients. I am a patient and I am an advocate. Now, don’t get me wrong, talking to people isn’t the only thing that I enjoy about going to the ACR meetings. Being able to listen to a session also allowed me to build my knowledge about my disease. For me, knowing the “whys” behind the things going on in my disease helps me to understand where my medications come into play, why my body reacts the way it does to inflammation and pain, and what is coming down the pipeline in terms of medications and treatments. There were also over 150 exhibitors that also had some really yummy incentives to go to their booths such as shakes and coffees and who knows what else!

This year, we also had the Limited Mobility Suit that allows the wearer to experience a majority of the same limitations Rheumatoid Disease causes in daily life. The only thing that was missing was the pain. While it was fun to see how the “victims” would adapt to wearing the suit, I really believe this is a great tool to help those doctors who may not quite understand what it’s like not to be able to fasten small hooks or zip zippers in clothing or hold a utensil or even be able to raise your arm to pull a shirt over your head.

Last but not least, why I would go again in a heartbeat? That would be for the fun and friendship that you get from finally being with people who understand exactly what you go through on a daily basis. These are friends that once you meet them in person, your friendship is cemented forever. It took me 15 years to meet people who really understand what I go through. I have always been big on educating the people around me as to my disease and how to best help me. This is one time that I don’t have to do that and it still takes me by surprise every time someone proactively offers something to help me at the moment. You don’t have to pretend to be feeling fabulous if you hurt, but the excitement of speaking to everyone really gets those endorphins going and you don’t notice it for a moment. As you can tell, this is something I feel passionately about. It is up to us as patient advocates to help the public truly understand Rheumatoid Disease and eventually understand it well enough that a cure is found. And don’t be afraid to get a scooter so you don’t have to miss out on any of the good stuff.

Tags: ACR, Events Comments Off on In a Heartbeat

by KatieB

November: A Month to be Thankful

November 29, 2012 in Events, Patient Input

By Shannon Ragland

Over the past three weeks I have seen daily posts on social media from family and friends enumerating blessings for which they are thankful during this month of Thanksgiving. These posts in my feed have inspired me to ponder the things in my life for which I am most thankful, as well.

As in previous years, I am thankful for my family and friends. For a roof over my head and food on the table. For my sweetheart and for my gentle little dogs who keep me company. That I am still here in my 38th year. But this year I can share that I am thankful that so much work is being done by good people to find new treatments and a cure for Rheumatoid Disease, a.k.a. Rheumatoid Arthritis.

I know this because I was a volunteer last week with the Rheumatoid Patient Foundation (RPF) at the annual scientific meeting of the American College of Rheumatology (ACR) in Washington, D.C.. This was my second year helping with the RPF's booth in the exhibit hall, but was able to explore more of the meeting this year. To be able to read endless posters and meet scientists representing research in rheumatology and immunology from around the world was my pleasure and privilege. We also met many clinicians and individuals from the pharmaceutical industry and other patient advocacy organizations who stopped by our booth to find out what the RPF is all about.

We, the Rheumatoid Patient Foundation, are proud to be an organization conceived and created by patients, for patients. We represent an open door for better communication between patients and clinicians, and between patients and researchers. Patients yearn to be part of the solution, helping those dedicated to helping us.

Improving lives by educating and supporting patients, and improving care for all Rheumatoid Disease patients by endorsing a patient-centered approach, is what the RPF is about. This Thanksgiving I am thankful for Kelly Young, Katie Beth Young, the RPF Board of Directors, our RPF Advisory Board, and RPF volunteers for working to give Rheumatoid Disease patients a voice.

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

Tags: ACR, Events Comments Off on November: A Month to be Thankful

by KatieB

ACR 2012 – Sharing the Patient Perspective

November 16, 2012 in Events, Exciting

By Dana Symons

This 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 arthritis In 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."

Our 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!

Tags: ACR, Awareness, Events Comments Off on ACR 2012 – Sharing the Patient Perspective

by KatieB

Experiencing the Limitations of Rheumatoid Disease

November 9, 2012 in Events

Rheumatoid Patients: Have you ever wished that your doctors, friends, or family could experience first-hand just a little bit of what it's like to live with Rheumatoid Disease?

Health Professionals and Caregivers: Have you ever wondered what it really feels like to live with Rheumatoid Disease?

This year, at the American College of Rheumatology Annual Scientific Meeting, the Rheumatoid Patient Foundation will be providing that opportunity. At our booth in the Exhibit Hall, we will have with us a "limited mobility suit", designed specifically to mimic the limited range of motion and mobility that many patients with Rheumatoid Disease (RD) experience every day. This is a full body suit, with numerous straps that tighten to restrict joint movement.

Those who live with RD know all too well the frustrations that come with limited mobility, which can make some of the most simple and routine tasks near impossible. Picking up a cup of coffee. Washing your hair. Turning your car key in the ignition. Getting out of bed. Standing up from a chair. Once strapped in to the limited mobility suit, one can experience how difficult it really can be to perform some of these tasks with stiff joints that are difficult to bend.

Our hope is to offer the opportunity for ACR attendees to begin to understand some of the challenges RD patients face. Just imagine adding some pain and fatigue into the mix on top of the limited mobility and it will start to paint an accurate portrait of what many patients experience. To those who are attending ACR this year, we hope that you'll stop by our booth -- #510 -- to see this in action (or try it on yourself!) and learn more about patient experiences. For the rest of you, we hope to capture some video footage of the limited mobility suit to share with you!

Tags: ACR, Awareness, Events Comments Off on Experiencing the Limitations of Rheumatoid Disease