Why Won't They Diagnose Me?
AiArthritis Voices 360 Main, Full Episode 90
Air Date: October 1, 2023
This episode is a Step 2, as outlined in our 6 Step Patient-Led Problem Solving Process.
At AiArthritis, we represent those diagnosed, their care partners/support network, and the undiagnosed (often called the “Mystery Patients”). This episode is for those struggling to get diagnosed. Join co-hosts Tiffany, Kerry and Danielle as they share their personal diagnosis struggles and delve deep into the challenges many other patients face on their diagnosis journey. From navigating initial symptoms to facing dismissive healthcare providers due to 'normal' blood work, we're talking about common hurdles that delay diagnosis, then encouraging YOU to share your experiences and perspectives as well. Together, we will create a Patient-Led Guide to an AiArthritis Disease Diagnosis.
There are life-altering consequences of not getting diagnosed early, including decreasing chances to achieve remission and increasing the likelihood of comorbidities (such as multiple AiArthritis and related diseases, heart disease, and even Alzheimer’s and dementia). The guide we create will help the undiagnosed recognize signs their diagnosis journey may be getting derailed and understand crucial questions to ask health professionals during pivotal visits.
Share your story to help create a patient-led guide:
https://bit.ly/undiagnosedadvice
Episode Highlights:
- Explore the common struggles patients face while seeking a diagnosis, including being dismissed by doctors and misinterpreting 'normal' blood work.
- Hear unique stories from Danielle, Kerry, and Tiffany, revealing the emotional and physical toll of diagnosis delays.
- Discover how delayed diagnoses can lead to irreversible damage and additional health complications.
- Learn the value of patient advocacy and the importance of asking the right questions during doctor visits.
- Help us complete our initial Patient-Led Guide to an AiArthritis Disease Diagnosis! https://bit.ly/undiagnosedadvice
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!
Who is at the table?
Tiffany Westrich=Roberson, Director ejecutivo y persona que vive con espondiloartritis axial.
Kerry Wong, voluntario y persona que vive con artritis reumatoide
Danielle Dass, orientadora profesional y persona que vive con artritis reumatoide.
Descargo de responsabilidad: Este es un documento en constante actualización, lo que significa que lo actualizaremos continuamente para incluir consejos adicionales enviados por personas diagnosticadas y no diagnosticadas, así como por cuidadores/padres de menores.
All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode (Step 6 in our organization's 6-step process), where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process).
After each show airs we spin off the conversation into many discussions over various formats, which we now call #360its (new in 2022)!
And now, let's 360it!
The main Sunday episode is where we "put the topic on the table," but it's not where the conversation ends! Now we spin off the conversation into different discussion segments. Below you will find several 360its. Some are videos from the main episode, while others are audiograms (soundbites).
Soon we will be launching additional 360its, which will build on these conversations. We'll hear from patients in the United States, Canada, and Australia who are here to help you through the transition to biosimilars. We are also planning a WATCH PARTY, where we will play back segments of webinars that aim to teach you more about biosimilars - and you'll have your fellow patients at AiArthritis to talk through it all with you! Stay tuned.
360its & SHORT VIDEO CLIPS FROM THE MAIN EPISODE
Do you struggle with getting a diagnosis?
In this clip, Tiffany, Kerry, and Danielle open up about their personal struggles and journeys with diagnosis. They discuss the critical importance of early diagnosis and the obstacles they faced, from not realizing they needed help to encountering medical professionals who didn't listen. Join us in this eye-opening conversation as we shed light on the challenges faced by those with autoimmune and autoinflammatory arthritis conditions.
Your Host: Who is at the Table this Episode?
Tiffany Westrich-Roberson
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.
Connect with Tiffany:
- Facebook: @tiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
Kerry Wong
Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories.
Connect with Kerry:
- Instagram: @buttahflyk
- Twitter: @buttahflyk
- Facebook: @floatlikeabuttahfly
- Website:
http://bit.ly/floatlikeabuttahfly
Danielle Dass
Danielle is a career educator, wife, and mother of 3. She was diagnosed with Rheumatoid Arthritis and Primary Biliary Cholangitis after years of unproductive medical investigation. She is dedicated to educating fellow AiArthritis patients about the importance of liver health and metabolic testing. In her spare time, she also co-hosts a podcast with her husband and 10 year old daughter about the importance of film history for the next generation.
Connect with Danielle:
- Website: https://www.omnibusride.com/
- Email:
1in20000special@gmail.com
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!
Love the show? Help us make sure we stay on the air by making a donation.
Your contribution helps us continue the work we do every day to improve the lives of millions worldwide.