Episode 1: The Mystery Patient - How AiArthritis Came to Be
AiArthritis Voices 360 Episode #1
Air Date November 17, 2019
The route to diagnosis and treatment is often long and complicated.
In the first episode of AiArthritis Voices 360, join your host, Tiffany, and co-host, Kelly, as they introduce the mission at the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) and talk about their experience being "mystery patients" - which spurred a movement that eventually led to this organization.
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
(Scroll down the page to learn how!)
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Pull up your seat at the table
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.
Show Notes:
00:55 – Meet show host, Tiffany
01:10 – Tiffany's Diagnosis
01:45 – AiAVoices 360 Podcast Mission Statement
02:21 – Welcome Co-host Kelly
03:10 – History of Founding of International Foundation for Autoimmune &
Autoinflammatory Arthritis (AiArthritis)
03:34 – Tiffany's Mystery Patient Story
08:25 – How did Tiffany and Kelly Meet?
09:25 – We begin as a Movement
11:52 – How a Movement Became a Foundation
13:20 – Kelly's Mystery Patient Story
26:55 –We are growing/evolving organization
30:00 – Plans for the Podcast moving forward (Weekly episode, breakouts, etc)
30:55 – Mystery Patients (no correlation between lab values and symptoms) and "must
be stress" assumption
32:45 – How will the podcast serve as a resource for patients
33:44 – Invitation to submit questions and comments by visiting
aiarthritis.org/podcast, including Your Diagnosis Story (from this episode)
36:11 – Tiffany thanks listeners for tuning in
36:40 – Invitation to be co-host or guest on show by visiting aiarthritis.org/podcast
37:14 – Invitation to follow us on social media
37:23 – Invitation to follow Kelly's blog "As My Joints Turn" at
https://asmyjointsturn.com/or on FB and Twitter
38:00 – Invitation to join other patients on AiArthritis Voices, a private forum for
patients only run by our organization (aiarthritisvoices.org) -SITE WILL LAUNCH SOON!!!
39:15 – Future plans: taking the podcast on the road!
40:20 – Invitation to support the Podcast (details on aiarthritis.org/VIP)
40:47 – Closing
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).
Be sure to check out our top-rated show on Feedspot!
Your Co-Hosts & Guests: Who is at the table this episode?
Kelly Conway, Co-Founder
Kelly is a speech-language pathologist, author/blogger, and a patient advocate. She has been living with autoimmune arthritis since age 14 but wasn’t formally diagnosed until age 32. That diagnosis has changed more than 5 times over the past 18 years. Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. She has represented her state of Pennsylvania on Capitol Hill for the American College of Rheumatology multiples times, and speaks of the patient perspective at medical/pharmaceutical conferences. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy.
Follow Kelly: Check out Kelly’s blog is “As My Joints Turn: My Autoimmune Soap Opera” at www.asmyjointsturn.com . Visit her facebook page https://www.facebook.com/Lolabellaquin/ and twitter twitter.com/lolabellaquin . She has also authored a book about her chronically ill dog, called, “Making Lemonade with Georgia Grace.” Visit the facebook page about Georgia at https://www.facebook.com/georgiathecavalier .
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International Foundation for AiArthritis
6605 Nottingham Ave.
St. Louis, MO 63109-2661
Toll Free: 1-877-609-4226
Text: 1-314-282-7214
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