AiArthritis logo showing stylized infinite loop symbol in red with black dots, above organization name for International Foundation for Autoimmune & Autoinflammatory Arthritis.

Differentiating Arthritis Types - AUTO + Arthritis = Early Detection, Referrals, Diagnosis

From our Special AUTO Ball Series

AUTO Ball Special Series Episode 5

AiArthritis Voices 360 Full Episode 32

Air Date: June 14, 2020

Aired on Facebook May 16th, 2020

Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, streamed to Facebook, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. You can view the raw footage from the AUTO Ball on Facebook (see link below).

Differentiating Arthritis Types will help all people, with all types of arthritis, gain more understanding - and possible respect - for their condition, will increase detection and referrals, can lead to improved Quality of Life (QOL) and lower healthcare costs long term. The need to differentiate arthritis types, including the focus on a couple dozen autoimmune diseases and autoinflammatory diseases that include arthritis as a major clinical component.


Over 100 autoimmune or autoinflammatory diseases, not all include arthritis. The arthritis is different from other types (like OA or gout). It also can vary in aggressiveness and degree of disease burden. For all, the arthritis differentiates these diseases from the other 100+ and that is why we need to bring light to it.


It’s also equally important to teach both the public and practitioners about the differences so they do not dismiss it (i.e. you’re too young to have osteo, OR if you are older that “it’s not OA so it’s nothing) - lending to delays seeking medical attention. 


In this episode, we expand the conversation from patient-reported issues about the need to differentiate arthritis types to including the rheumatologist point of view. What can patients and rheumatologists do to help educate primary care physicians - and other rheumatologists - to consider the AUTO disease features + arthritis to increase detection, referrals, and diagnosis? How can organizations and patient-focused companies get involved? 


This episode builds on prior conversations (The Need to Differentiate Arthritis, Typical vs Atypical, and Diagnosis STAT!) and will expand to include more stakeholder voices as we continue the discussion in future episodes - including Rheumy RoundsⓇ and with other nonprofits from around the world. The end goal is to develop materials to educate the public and practitioners about the AUTO + Arthritis diseases and, in turn, increase awareness, expedite detection and diagnosis, and lower healthcare costs associated with delays. 


*Rheumy RoundsⓇ is a pilot episode developed by our organization that unites patients and rheumatology professionals at the table - as equals - to discuss issues that, if solved, would improve communication and outcomes.  Learn more about the people "at the table" and other associated AiArthritis Voices 360 episodes below. 

LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 

(Scroll down the page to learn how!)

You can find, follow, and listen on Podbean, Spotify, Apple Podcast, or where ever you do podcasts. Please follow, rate, and subscribe to the show, then share it with someone. Be sure to check out our top-rated show on Feedspot!

Would you like to view the raw footage from the original recording?
WATCH NOW: Live Episode from our Youtube Page

Pull up your seat at the table

Now it's YOUR TURN to join the conversation!

What do you think about this episode?

We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community.  Better yet, through these conversations we can start working and developing solutions.


We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!


Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)

Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!

Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!

The AiArthritis Voices Program

Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.


AiArthritis Voices is our program where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives.


If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect. 

Join AiArthritis Voices


Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!


If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.


JOIN TODAY! 

 

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).

Be sure to check out our top-rated show on  Feedspot!

Your Co-Hosts & Guests: Who is at the table this episode?

Event Host: Tiffany Westrich-Robertson

Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels. 

Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.

Show Co-Host: Suz Schrandt
Suz Schrandt is a patient diagnosed decades ago with Juvenile (Rheumatoid, now called Idiopathic) Arthritis and patient engagement advocate with a health and disability law background. 

She recently launched a new patient engagement initiative called ExPPect and is currently serving as the Senior Patient Engagement Advisor to the Society to Improve Diagnosis in Medicine. Schrandt previously served as Director of Patient Engagement at the Arthritis Foundation, and as Deputy Director of Patient Engagement for PCORI. Her career spans work in health reform, bioethics, and genetic discrimination, as well as a long history in patient-led clinical training. Schrandt is one of nine voting members on the FDA’s inaugural Patient Engagement Advisory Committee, the Chairperson for the International Society of Pharmacoeconomics and Outcomes Research North American Patient Roundtable, and has been an invited speaker at numerous US and international conferences. Schrandt received her law degree from the University of Kansas and has co-authored multiple publications on health policy and the value of patient engagement. 

More about ExPPect: Patient engagement should be the expectation and not the exception. ExPPect is like a 'do-tank' if you need to get patient engagement done, or you need to understand what patient engagement is, or how to involve patients in important work in healthcare research or clinical education training. 

Society to Improve Diagnosis in Medicine is working to create a world where no patients are harmed by diagnostic error.

Guest Co-Host: Dr. Alfred Kim

Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim’s research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE.


Twitter: @alhkim

References from this episode

The Need to Differentiate Arthritis Types

Listen to mini-episode 2 where Tiffany discusses the need to differentiate arthritis types to address misunderstandings that lead to relationship conflicts and early diagnosis, which can result in compromised quality of life and elevated costs to our healthcare systems.

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Typical vs Atypical

Listen to episode 2 where Tiffany and Deb discuss the challenges faced by patients who experience atypical disease presentations, especially the need to advance our understanding of this phenomenon because the typical is not so typical. 

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Diagnosis STAT!

Listen to episode 6 where Tiffany and Suz discuss the importance of early detection and diagnosis. They address barriers to receiving an accurate diagnosis, as well as what patients can do to increase their chances of receiving an accurate diagnosis in a timely fashion.

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