Episode 46: The ”A” Word

This week join us for an AiArthritis Voices 360 first!  In honor of World Arthritis Day on October 12, 2020, seven of your recurring Voices 360 co-hosts come together for an essential conversation about educating the public and the medical community about the many different types of arthritis that exist, especially the key differences between Osteoarthritis and AiArthritis. Thank you to Tiffany Westrich-Robertson, Deb Constien, Rick Phillips, Effie Koliopoulos, Patrice Johnson, Suz Schrandt, and Judy Flanagan for participating in this important round table discussion.

Our organization was enlisted in 2012 by EULAR to help bring more attention on World Arthritis Day to the autoimmune/autoinflammatory diseases that also included arthritis, as they felt the day was heavily focused on OA.  Since then, we have tried to make sure on World Arthritis Day to really focus on the AUTO + Arthritis so our community is heard.

Join the co-hosts as they dig into misconceptions about arthritis, as well as how the lack of public awareness contributes to poorer quality of life for people living with AiArthritis diseases. 

• What do you think of when you hear the word "arthritis"?
• How have misconceptions negatively impacted your life?
• Some push for eliminating the word arthritis from the names of certain diseases, in the hopes that the misunderstandings can be eliminated - but is that realistic?  Oh, yes, we go there. 

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. 

 

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).

 

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