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