AUTO + Inflammatory Arthritis: Diagnosis, Please!

AiArthritis Voices 360 Main, Full Episode 82

Air Date: February 5, 2023

This episode is a Step 5 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.


Join us for this episode where the co-hosts, Tiffany and Leila, share their personal journeys of being diagnosed with AiArthritis diseases. Tune in to hear how their journey of being diagnosed and misdiagnosed and the lessons they learned throughout the process. 


We also delve into the exciting new resource tool developed by AiArthritis, which helps patients navigate the process of seeking a diagnosis, understanding symptoms, and asking the right questions of their doctors. Plus, we invite other patients to share their stories and provide insights for those just starting their Auto + inflammatory arthritis journey. Join us for an informative and uplifting conversation on Auto + inflammatory arthritis diseases. 


If you would like to share your story, insights or recommendations to help improve our new tool, please fill out the Google form on www.aiarthritis.org/diseases


Episode Highlights: 


  • Leila and Tiffany share their different stories of being diagnosed with their diseases 
  • Importance of resources for auto + arthritis diseases for patients to compare their symptoms to and hear other patients stories
  • How to best be supported on the journey of discovering what your disease may be when you show first signs of symptoms 
  • What questions are recommended to ask your doctor when searching for a diagnosis
  • List of different symptoms you may experience with auto or arthritis diseases
  • Best advice for patients seeking AiArthritis diagnosis 



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-Robertson, CEO of AiArthritis and person living with non-radiographic axial spondyloarthritis, &

Leila Lagandaon, Health Education and Engagement Manager of AiArthritis and person living with Lupus Nephritis and Sjögren's syndrome.

LISTEN TO OR WATCH THE FULL EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 

Click here to pull up a seat!

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, 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)!

 

You can find, follow, and listen on Podbean, Spotify, Apple Podcast, or where ever you do podcasts. Please follow, rate, and subscribe to the show, then share it with someone. Be sure to check out our top-rated show on Feedspot!

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.

*New* 360it SPIN-OFF VIDEOS

360it Video #1

Will She Get Diagnosed? Follow Phedre

Join us in this 360it spin-off as Tiffany and Phedre dive into Phedre's journey of living with AUTO + inflammatory arthritis SYMPTOMS + psoriasis + low back inflammation, but NO diagnosis?! Phedre shares her personal experience with various symptoms, while Tiffany offers invaluable insights and guidance on what to expect and what questions Phedre should ask at her initial rheumatologist visit next week. What advice would you give her?


If you are can relate to Phedre’s journey and are looking for guidance for your own doctor visits, please reach out to us at https://www.aiarthritis.org/contact

SHORT VIDEO CLIPS FROM THE MAIN EPISODE

360it Short Video #1

AiArthritis New Resource Tool

Not everyone experiences the same symptoms, so we're putting together a comprehensive resource to help you track your symptoms and get the right treatment. We also dive into the importance of symptom tracking to provide your doctor with the most amount of data possible when on the journey to a diagnosis.

360it Short Video #2

Journey to a Diagnosis

Tiffany shares her experience of her developing and changing symptoms as a call-to-action for viewers to take control of their health and never give up, even when things seem hopeless. Tiffany aims to create awareness and understanding of AiArthritis diseases by having more patients share their stories so we can all learn what symptoms to be aware of when seeking a diagnosis.

360it Short Video #3

Patient Diagnosis Story

Leila's diagnosis journey started at the age of eight with immunothrombocytopenia (ITP), which eventually led to her diagnosis of lupus. She shares her experience of managing her symptoms as a college student and learning self-care. Her story highlights the variability of autoimmune diseases and the importance of proper diagnosis. The video sheds light on the challenges faced by those with lupus and emphasizes patient-focused drug development.

SHORT AUDIOGRAMS FROM THE MAIN EPISODE

360it #1

Tools When Seeking a Diagnosis

The road to a diagnosis can be a long and challenging one, but having a support system can make all the difference. How was your journey to your diagnosis? This #360it is a spin off from our recent episode diagnosis! 

360it #2

Inflammatory Arthritis Symptoms

Some generalized symptoms for inflammatory arthritis diseases are severe stiffness in your whole body, joint pain and jumping pain. This #360it is a spin off from our recent episode diagnosis!

360it #3

The Importance of Symptom Tracking

Your doctors need data to help diagnosis you therefore symptom tracking is one important aspect patients can do to help provide as much information as possible. This #360it is a spin off from our recent episode diagnosis! #autoimmune #autoinflammatory 

360it #4

AUTO Generalized Symptoms

Although everyone's symptoms can be very different and unique, it is important to know the generalized AUTO symptoms such as severe fatigue and exhaustion, brain fog, and flu-like symptoms. This #360it is a spin off from our recent episode diagnosis! 

360it #5

Creating a Patient-Led Resource

We are working on developing a new innovative resource tool for patients!
This will provide the tools and knowledge you need to take control of your healthcare journey. This #360it is a spin off from our recent episode diagnosis! 

*NEW* 360it #1  Spin-Off Conversation

Will She Get Diagnosed? Follow Phedre

Patient empowerment is crucial to receiving the right diagnosis and care. Watch Phedre share her hopes, fears, and updates on her AiArthritis disease journey, where lack of acknowledgement and validation for symptoms is a very common and real fear.

Your Co-Hosts & Guests: Who is at the table this episode?

Tiffany Westrich-Robertson

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. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels. 


Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.


  • Facebook: @TiffanyAiArthritis
  • Twitter: @TiffWRobertson
  • LinkedIn: @TiffanyWestrichRobertson


Leila Lagandaon

From a young age, Leila Lagandaon always had a passion for helping people. At 8 years old, she was diagnosed with immune thrombocytopenia (low platelet count). She spent a lot of time in the hospital trying different infusions and therapies; including prednisone - yuck! Rituximab ended up being the biologic that saved her life. From that experience, she knew that she wanted to be able to help people just like all the healthcare workers at UCSF helped her through that difficult time. 


As a Filipino-American, Leila always thought she would become a nurse, just like her mother and grandmother. Before moving from the Bay Area to start her freshman year at California State University, Long Beach as a pre-nursing major, Leila experienced her first major lupus flare. She was tasked with battling this flare and establishing new doctors by herself at 18 years old. Due to the heavy workload, and all the symptoms of her recent flare, she was unable to complete the prerequisites for the nursing program and found herself switching her major to Health Science - Community Health Education. There she discovered her love for health education and promotion. She learned the importance of access to quality healthcare and the need for patient advocacy. She brings those values to her work here at AiArthritis. 


Leila is our Health Education and Engagement Manager here at AiArthritis. Leila continues to live in sunny Southern California and when she is not working, you can catch her watching Golden State Warriors games, playing board games, watching reality TV, or singing her heart out to some R&B. You can also find her on Instagram or TikTok discussing her life as a person living with Lupus Nephritis and Sjogren’s Syndrome as @LupusLifestyle.Lei.

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!

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