The "A" Word

AiArthritis Voices 360 Full Episode 46

Air Date: October 4, 2020

Join Tiffany, Rick, Effie, Deb, Patrice, Suz, and Judy as they talk about the frustrations surrounding the word "arthritis". They talk about how misunderstandings lead to delays in diagnosis and treatment and public confusion (it's not all the same!) They also go into a touchy subject - changing disease names to avoid the word altogether. 


We are putting this conversation on the table so you can join us inside our new and improved AiArthritis Voices online community - starting October 12th, World Arthritis Day - to continue the discussion. Then, together, we can increase educational efforts to combat this issue and bring more understanding to arthritis types. 

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

(See table icon below)

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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
NOW IT'S YOUR TURN TO JOIN THE CONVERSATION!
Would you like to actually continue this conversation with Tiffany, Rick, Effie, Deb, Patrice, Suz, and Judy?  Well, you can! 

As always, now it's YOUR TURN to join us "at the table" on this Talk Show AND all the work we do at our organization... but now you can do it all in one place, inside our NEW coordinating AiArthritis Voices ONLINE COMMUNITY.   Sign up (FREE) today!

There is a short application to complete, then we will contact you to inform you of your approval - along with directions to join and who your Site Guide will be. Site Guides are also people  living with our diseases who will walk you through step-by-step to ensure you get connected to all the projects, activities, and resources that are most important to you.

Patients & Parents of juveniles: Join AiArthritis Voices

All other stakeholders: Significant others, family members, health care workers, government officials, companies (pharmaceutical and nonpharmaceutical) - any person who is in some way connected to a person living with AiArthritis diseases, we need YOU "at the table" too! Join us by signing up to be part of the conversation in a variety ways, including through our new UPGRADED AiArthritis Voices community site and our show!

All Other Stakeholders

Show Notes: Episode 46 - The "A" Word


00:53 - Tiffany welcomes listeners

01:20 - Tiffany introduces her panel of patient co-hosts - including Deb, Rick, Effie, Patrice, Suz, and Judy

03:18 - Today’s episode will address the issue of differentiating arthritis types and the loaded nature of “The A Word”

04:00 - The panelists discuss the frustrations AiArthritis patients have because the word “arthritis” is usually associated with elderly people, but most AiArthritis patients have onset when they are young

05:35 - Patients may avoid the word “arthritis” when discussing their medical issues with people because so many people have mistaken assumptions about the word

08:44 - Other patients may be careful to say “Autoimmune Arthritis” to discourage people from thinking about traditional Osteoarthritis

10:46 - Due to poor understanding of the word “arthritis,” doctors may dismiss symptoms in young people or systemic symptoms of rheumatological disease that aren’t related to joint damage

15:17 - Suz discusses the importance of early diagnosis and treatment

18:37 - Treatment for Autoimmune Arthritis diseases usually focuses on preventing joint damage, but often the other systemic symptoms are ignored completely

25:09 - Patients may feel frustrated when they have to explain the difference between osteoarthritis and autoimmune arthritis to others

25:44 - Sometimes people are reluctant to see a Rheumatologist and will only discuss their symptoms with their Primary Care Physician, who may not be able to determine if joint pain is AiArthritis or Osteoarthritis

29:05 - The Stills Disease Community has recently tried to move away from the term “arthritis” due to frustrations around inability to get accurate medical care

31:11 - There are actually over 100 different types of Arthritis, but the majority of people only understand Osteoarthritis and aren’t even aware there are other kinds

32:31 - The public seems to have a better understanding of complex features of other diseases (like diabetes and asthma) than they do about arthritis

34:42 - The Diabetes and Medical communities have spent 20+ years educating people on the complex features of Diabetes to improve patient outcomes

35:58 - Because most people will experience Osteoarthritis at some point in their lives, it is the type of arthritis that is always going to be better understood than others

38:26 - The Lupus Community does not wish to be associated with the term Arthritis, even though Autoimmune Arthritis is a clinical component of their disease

40:09 - Sometimes people fail to understand the seriousness of AiArthritis because they believe patients never die from those diseases

41:24 - The 2020 EULAR conference had many seminars on the systemic nature of AiArthritis diseases because they cause more than just joint damage

42:49 - Many patients wanted the name of their disease changed to distinguish it from arthritis which requires a united global effort of all stakeholders 

44:15 - In addition to issues with coding and research, rebranding diseases by name would consume a lot of resources that could be used for research or development of new medications

49:58 - Poor understanding of AiArthritis diseases by the public and medical community takes an emotional toll on patients who feel misunderstood and unsupported

52:36 - The invisible nature of AiArthritis diseases can also cause emotional and physical distress to patients as society places unreasonable expectations on them

54:12 - People are so uncomfortable talking about disease and death that they may inadvertently blurt out unsupportive commentary in a misguided attempt to lift someone’s spirits

59:47 - Join all of AiArthritis Voices 360 co-hosts to discuss this and other topics by visiting aiarthritis.org/aiarthritisvoices to join our new online platform which will be premiering on World Arthritis Day, October 12, 2020


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?

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.


Rick Phillips

"Lawrence 'Rick' Phillips has spent over 30 years in local government and local school district administration in Indiana. He has, at various times, been a Director of Finance, City Controller, Personnel Director, Development Director, and all-around computer guy (that position lasted one year). He grew up and lives in central Indiana with his wife Sheryl of more than 40 years. They have two sons and three grandchildren. Rick was diagnosed with type 1 diabetes in 1974 and RA in 2000. He was also diagnosed with ankylosing spondylitis in 2105. Rick has used six biologic medications and has had several surgeries related to RA.

He was diagnosed with AS in 2016 and at that time He vowed to live until He have at least five autoimmune diseases. Hey, a man needs a goal. He loves to ride his bicycle, not far or fast, but for fun. He often writes about RA and diabetes issues on his website, RADiabetes.com. Rick will discuss his grandchildren, given even a slight chance. He credits his father and years of work in the public sector for his dry sense of humor. Rick earned his BS and MS from Indiana University in 1979 and 1989, respectively and an Ed.D. from Nova Southeastern University in 2012. "

Effie Koliopoulos
Effie is a writer, blogger, and award-winning patient advocate. Her interest in advocacy began a decade ago when she interned for the Arthritis Foundation in Chicago. Since then she has expanded her outreach by working with various organizations and attending the American College of Rheumatology Conference in Washington D.C., to discuss the concerns and needs of the arthritis community to legislators. She created her blog, Rising Above rheumatoid arthritis in 2016 in order to share her story, connect with others and raise awareness for the community. Effie has been featured in places such as, Yahoo Lifestyle, Everyday Health, Health Central, WEGO Health, NewLifeOutlook, theRAconnection, and The Mighty. She is born and raised in the Chicagoland area, where she currently resides and is working on her debut children’s book. Her recent three-part film series, I Am Invisible No More can be viewed on her YouTube channel, RA and Myself.

Deb Constien
Deb has been living with Rheumatoid Arthritis for three decades and while she has experienced disability from it, she never lets her disease dominate how powerful her voice can be. 

She has been a key Representative (high level volunteer) for our organization for several years and often takes a leadership role in many programs and mission initiatives, including attending meetings as the voice of the organization. She is also a Platinum Ambassador at the Arthritis Foundation, as well as various other nonprofits, and has formerly and currently used her voice as a Patient Research Partner (Wisconsin Research and Education Network (WREN), OMERACT, Arthritis Power through CreakyJoints and more). She has represented her state of Wisconsin on Capitol Hill and at a local multiples times, and most recently was a key player in helping to pass step therapy legislation in her state.

Patrice Johnson

Originally diagnosed with Rheumatoid arthritis 9 years ago, Patrice now has an undifferentiated diagnosis. She has also been told she has had Osteoarthritis for 35 years. Along the way she developed some comorbidities which include severe hearing loss, a Baker's cyst, osteopenia, and a vein ablation. Patrice lives in Northern California and have 2 grown children and 5 grandchildren. She loves to travel, read, and cook.  

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.

Judy Flanagan

Judy is a person diagnosed with Rheumatoid Arthritis from Australia. She is a dedicated volunteer Representative for our organization and an IPain Patient Partner (International Pain Foundation).

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