Typical vs. Atypical: Which are you and why does it matter?
AiArthritis Voices 360 Full Episode #2
Aired: November 24, 2019
This episode join your host, Tiffany, as she and co-host Deb Constien 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. This concept is vital for early detection and improving outcomes. They also explore the ways that a lack of commonality among disease presentation and progression impact advancements in treatment options.
Additionally, learn how our organization is addressing this issue in our current projects by scrolling to the bottom of this page.
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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.
Show Notes:
01:04 – Welcome Co-Host Deb
01:24 – Typical is not so typical
02:39 – What does atypical mean?
03:06 – Why our organization focuses on atypical presentation of disease
04:20 - Only 30-40% of patients respond to “typical” treatment protocols for their diagnosis
05:43 - Deb’s Story
13:39 - Atypical presentation can affect treatment options which impacts longterm prognosis
15:25 - Deb’s disease progression has slowed significantly and she is able to repair some of the previous damage
18:19 - Shortage of available rheumatologists makes atypical diagnoses even more challenging due to extended wait times
21:58 - Senior patients may have trouble getting a diagnosis because arthritis is automatically attributed to age
23:30 - Unavailability of MRIs can be another barrier to accurate and timely diagnosis
25:31 - Lack of insurance or lack of coverage with some insurance plans can limit patient access to treatment options
26:38 - Participating in clinical trials can give patients access to otherwise prohibitively expensive treatment options, but only if they fit the typical model for the diagnosis
32:24 - Invitation to visit AiArthritis.org/podcast and share your story with us
33:15 - How should our organization define typical and atypical? Visit the website to participate in the discussion.
34:25 - Tiffany thanks listeners for tuning in
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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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.
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