In 2022, I was invited to bring my voice (quite literally!) to the AiArthritis Voices 360° Talk Show. This show brings together patients and other stakeholders to discuss issues impacting the autoimmune and autoinflammatory arthritis community.The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) airs the main show on the first Sunday of every month, and the conversation continues in all directions (we "360 it") from there. Below, you'll find links to the episodes in which I played a part. You can find all the episodes here or wherever you stream podcasts.
Air Date: October 1, 2023
Co-Hosts: Danielle Dass (Ride the Omnibus); Tiffany Westrich-Robertson (AiArthritis); Kerry Wong (Float Like a Buttahfly)
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.
Keep the conversation going (#360it):
❄️ Read the column: Problems on the long and twisted road to a sarcoidosis diagnosis
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Air Date: September 3, 2023
Co-Hosts: Leila Lagandaon (AiArthritis); Deb Constein (AiArthritis); Kerry Wong (Float Like a Buttahfly)
Tune in to the latest episode of AiArthritis Voices 360 Talk Show, where your co-hosts Leila, Deb, and Kerry candidly share their personal journeys of undergoing surgery while living with AiArthritis diseases. In this episode, the co-hosts delve into their surgical experiences, including the pivotal surgeries they've had due to their conditions. From Deb's journey triggered by a bunion removal to Kerry's hip replacement due to the complex interplay of autoimmune conditions or Leila’s gastric sleeve surgery due to weight gain from treatments, the trio reflects on the unexpected intersections of surgeries and AiArthritis diseases.
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Air Date: December 4, 2022
Co-Hosts: Tiffany Westrich-Robertson (AiArthritis); Kelly Conway (As My Joints Turn); Kerry Wong (Float Like a Buttahfly)
Have you ever experienced the frustration of not being able to get a diagnosis, or worse, receiving the wrong one?
In this episode, our co-hosts Tiffany, Kelly, and Kerry, dive into what it is to be a mystery patient. In addition, they each share their personal experiences of being a mystery patient, and the challenges they experienced with delayed diagnosis. Whether you're a mystery patient or have had similar experiences, this episode sheds light on the lessons learned, triumphs, and struggles that many face and why your story matters. Share your story with us today at aiarthritis.org/mysterypatient and help us all learn more about AiArthritis diseases.
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Air Date: December 4, 2022
Co-Hosts: Tiffany Westrich-Robertson (AiArthritis); Kerry Wong (Float Like a Buttahfly); Dr. Lisa Zickhur, Washington University Rheumatology
In our RheumyRounds, we bring rheumatologists and patients to the table. During this episode, Tiffany and I share our experiences as patients and Dr. Lisa Zickuhr shares her perspective as a physician. Together, we highlight the importance of communication, compassion, and openness in bettering patient-doctor relationships.
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Episode 79: Patient Leadership in Research
Air Date: November 6, 2022
Co-Hosts: Tiffany Westrich-Robertson (AiArthritis); Deb Constein (AiArthritis); Eileen Davidson (Chronic Eileen); Kerry Wong (Float Like a Buttahfly)
Patient involvement in research is key to developing knowledge and understanding around the many AiArthritis diseases. As people living with AiArthritis diseases, there are lots of ways we can get involved with patient research, such as clinical trials, surveys, focus groups, and data banks. We also discuss inclusion in conference attendance (learning about research), as well as being part of the reach team as equals. In this month’s episode, co-hosts Tiffany, Deb, Eileen, and I, all living with AiArthritis diseases, discuss the importance of patient involvement in research.
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Air Date: May 1, 2022
Co-Hosts: Tiffany Westrich-Robertson (AiArthritis); Katie Simons (AiArthritis); Effie Koliopoulos (Rising Above RA); Eileen Davidson (Chronic Eileen); Kerry Wong (Float Like a Buttahfly)
In this revisit to the table, Tiffany, Katie, Effie, Eileen, and I discuss the many layers around the word “arthritis” including 1) Misunderstandings around the word that can lead to delays in diagnosis, family and friend judgments, 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.
Keep the conversation going (#360it):
❄️ Read the column: The Importance of Asking Questions About Arthritis and Sarcoidosis
❄️ Join the conversation on Twitter: #SarcChat360
