Episode 73: ”Arthritis” Awareness - It’s Complicated!

In this revisit to the table (Step 5 in our problem-solving process), Tiffany, Katie, Effie, Eileen, and Kerry discuss the many layers around the word “arthritis” including: 1) Misunderstandings around the word that can lead to delays in diagnosis, family and friend judgements, and the different type associated with “AUTO” diseases; and 2) Complexities that exist when trying to identify the AiArthritis from other potential comorbidities (Osteoarthritis, bursitis, enthesitis) and how clarity about this could help with detection, access to the right treatments, and overall better health outcomes. 

 

This conversation takes many turns, all which address issues identified from lived patient experience. Why is differentiating arthritis types important? How many of us referenced family history to expedite diagnosis? How does public, family, and even doctor misunderstanding of our diseases play into diagnosis and exploring potential comorbidities? How accurate is the literature in regards to arthritis prevalence in comparison to what patients report to be true? They even started brainstorming the development of a new tool that could help the public, patients, and health providers better understand the layers of our diseases as well improve communication and overall disease journeys. 

 

Now it’s YOUR turn to weigh in!  There’s a lot to talk about, join us ‘at the table’ so, together, we can change the stories of tomorrow! Submit your comments here, at podcast@aiarthritis.org, on our social platforms at Facebook, Instagram, Twitter, or LinkedIn @IFAiArthritis. 

 

Show Notes:

• • 00:53 Tiffany (CEO, non-radiographic axial spondylitis) introduces the show and co-hosts, Katie (Programs & Communications Manager, rheumatoid arthritis), Eileen (“Chronic Eileen” rheumatoid arthritis), Effie (“Rising Above RA”, rheumatoid arthritis), and Kerry (“Float Like a Buttahfly”, sarcoidosis). 
  • 3:13 Tiffany officially welcomes Elieen and Kerry as the newest recurring Co-Hosts!
  • 3:37 Explains a new addition to the show - the “360its!”, where any topic or comment from the episode is eligible to spin off into different conversations in any communication format (facebook live, twitter, 
  • 4:37 Topic is around the word arthritis, as a Step 5 (revisit to the table) issue, because in the US it’s Arthritis Awareness Month and May 20th is World AUTOimmune & AUTOinflammatory Arthritis Day
  • 6:35 Co-hosts start the conversation by answering the question, “Why do YOU think the type of arthritis associated with our diseases - and differentiating it from other types - is so important?” All co-hosts share their stories and perspectives.
  • 11:17  In the stories shared, the co-hosts outline a journey from “What’s wrong with me?” to “Misunderstandings” to “public education” and “doctor education” and “overlap of types of arthritis (also Osteoarthritis) or other comorbidities.” If we (patients, public, families, doctors) better understood arthritis and the types we could improve detection, referrals, diagnosis and, in turn, improve quality of life, increase rates of remission, and lessen unnecessary disability. This can lead to better overall healthcare and improved costs for healthcare systems. 
  • 12:52 Tiffany opens the conversation to discuss anyone’s experience with relatives having our diseases. Did anyone say, “Did you have a history of autoimmune/autoinflammatory disease in your family and, if so, did anyone say to you when figuring out what was going on with you, ‘Hey, this person has XYZ, maybe you have something in that family?” They continue discussing this and determine in their cases the connection between family history and detection/diagnosis was not common. This is an opportunity to discuss further because family history and communication about it could expedite diagnosis.
  • 17:18 Kerry puts this perspective on the table - Not all families talk about things like illness, so in those cases knowing family history is hard. But given we know AiArthritis diseases are part genetic, this could be a key factor that could either lead to quicker diagnosis, or prolong diagnosis. 
    • 18:16 Kerry - Talking about the statement “It’s all in your head” - “Once I had something visible - rash on my legs, swelling - I could say ‘I’m not making this up!” Bloodwork was fairly normal except a positive test for autoimmune thyroid, which led to a sign of diagnosis. But it took the visible plus some type of autoimmune direction in bloodwork to get there.
  • Most agree, they only realized other family members had something similar after diagnosis. Could this be in part also because it’s not understood by families that ANY of out 100+ “AUTO” diseases counts as family history?
  • Tiffany explains the importance also of knowing family history, as newer research is moving towards prevention - or at least catching the disease very early - based on certain biomarkers + known environmental triggers + family history. 
  • 21: 12 Conversation continues about family history when it comes to the doctor visit (not asked). Often this leads back to the patient trying to push testing and googling what they have. 
  • 22:37 Group starts discussing delay in diagnosis journeys, including overlap of symptoms and the arthritic component, and how important the right diagnosis matters.
    • A lot of delay in diagnosis for Kerry came from the doctors not understanding so self advocacy became necessary to help them figure it out.
    • When you have a rare disease, less knowledge is often present and, therefore, more self advocacy necessary.
  • 28:48 Effie revisits the topic of family history and how culture and heritage can impact conversation (“We don’t talk about family illness.”). Or, in her case, as immigrants, a lot wasn’t documented. This has, in part, encouraged her to start sharing her story to help others have those ah-ha moments.
  • 31:11 There are different kinds of arthritis and some of us have more than one, which can lead to confusion in diagnosis (“You’re too young to have arthritis”, “You’re too old to have RA”) and family misunderstandings (“oh I have that too, it’s not that bad”). They discuss why it’s important for patients to know which type they have - or if they have more than one type. Also, how do we differentiate the systemic systems (part of our disease or comorbidity?)
    • How does it overlap or is it separate? Is there a way to treat one differently than another and, if so, what should I know?  How do I identify where my pain is coming from and what am I doing to trigger this pain - did my meds stop working or is this something new? Also, since our diseases are systemic and affect organs, too - that plays into this as well.

• 39:05 This is a Step 5 episode, which means we have discussed these topics enough over the last year, including in this episode, to be at a point where we can head into Step 6 - which is creating a solution. In this case, a resource to help with identifying AUTO + Arthritis (and potential comorbidities) so we can improve detection, diagnosis, and disease management.  Things to consider in developing this tool:

• • • Name your pain. What kind of pain do I have? (joint, enthesitis, non-joint, fibro pain, bursitis pain?) Where is it located? (Symptom chart)
    • What disease do I have? How can this resource be used to share with doctor?
    • Make it patient-led, then doctors review.
    • Potential comorbidities
    • Include building vocabulary and considerate of families/juveniles
  • 42:50 Group discusses why this tool is also important - often doctors will not connect the dots on their own. Kerry gives an example of a doctor considering pituitary gland involvement because, “That could cover many varied issues.” It’s THAT line of thinking, “What could cover many varied issues?” that doctors need to consider.
  • 44:04 “Those with sarcoidosis are thought to have lung involvement so if that’s missing as a first symptom it may be missed.”
    • The prevalence of arthritis, and what doctors believe is the correct percentage, may differ from patient-reported prevalence. They give examples of Sarcoidosis. It's thought that only 30% have arthritis, but Kerry hasn’t met one person without it. Recently in Still’s Disease (which includes systemic JIA), research has shown about 25% of patients do not have arthritis - especially as a first symptom. Yet the diagnosis triangle for Still’s taught to doctors is look for arthritis, rash, high fevers.
    • Is arthritis part of the disease or a comorbidity?

• 49:45 Katie mentions pain evolves in perception and simply getting used to it over time (pain is normal). How does this play into pain reporting? How does measuring pain and personal tolerance and mindset play into this?

• 55:25 What if the arthritis isn’t so bad and it’s the AUTO features that dominate. How can we communicate this? The group also discusses the importance of not eliminating arthritis as a clinical component altogether if it is or was part of your disease. (It’s important for our tool. Is it earlier in their disease, later, a later comorbidity/OA developing?)
• 59:05 Tiffany wraps up the show, starting by inviting the audience to weigh in on the tool we started to brainstorm about in this episode. You can submit your ideas at podcast@aiarthritis.org, via messenger on social media @IFAiArthritis, social media posts about it.
• 1:01 Kerry, “Float Like a Buttahfly” can be found on Twitter and Instagram @ButtahflyK and on Facebook Float Like a Buttahfly; Effie Instagram and Twitter @RisingAboveRA and on YouTube RA and Myself, blog: RisingAboveRA.com; Eileen, “Chronic Eileen” can google this name and also writes for CreakyJoints, Healthline, and Arthritis Research Canada. 
• 1:02:40 You can find AiArthritis at @IFAiArthritis on social media or on the web at aiarthritis.org/talkshow. While there please Tip the Team by giving a donation so we can continue providing this amazing resource!

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