66 episodes

AiArthitis Voices 360 is produced by the International Foundation for Autoimmune & Autoinflammatory Arthritis. On Sunday, join Tiffany and her fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most.

AiArthritis Voices 360 Podcast International Foundation for Autoimmune & Autoinflammatory Arthritis

    • Education
    • 5.0, 5 Ratings

AiArthitis Voices 360 is produced by the International Foundation for Autoimmune & Autoinflammatory Arthritis. On Sunday, join Tiffany and her fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most.

    Episode 35: AUTO Ball Honorary Chair, Angela Durazo: Shifting Gears - Turning Pain into Power

    Episode 35: AUTO Ball Honorary Chair, Angela Durazo: Shifting Gears - Turning Pain into Power

    Welcome to this episode of AiArthritis Voices 360, featuring a conversation we had on World AUTOimmune & AUTOinflammatory Arthritis Day (AiArthritis Day) with our Honorary Chair, Angela Durazo - race car driver, award-winning actress, and a person living with Rheumatoid Arthritis (RA). Angela was asked to be our Honorary Chair, in part, because of her RA and AUTO racing connection, but more importantly, she exemplifies what it means to "shift gears" when AiArthritis takes away your identity. Angela's triathlon ambitions came to a halt four years after she was diagnosed with RA after her 24th birthday. Multiple surgeries and much physical therapy later, she was determined to find a way to reinvent herself in a way that truly represented her core being. "I used my pain and I turned it into power," she says in this heartfelt conversation. "You too can reinvent yourself in a way that represents you, that aligns with your core values." Many of us have experienced the 'Who am I Now?' phenomenon, as these diseases challenge our capabilities to continue doing some of the things we once loved - things that we identify with as personal identifiers. The invisibility of these diseases adds to the frustration. But we can shift gears, we can find our new normals, all without having to change who we are as a person.   About AngelaAngela Durazo made history in 2018 as the first female to enter the F4 US Championships. Not only did Durazo compete in the 37-car field of the USF4 series, she forged her F4 talent with a 1st place win in the Formula IMR Challenge series. Durazo also secured two 2ndplace podiums of the 6 race F4 Winter Championships series and she took home a notable 5th place in the Fp4 F4 West Coast Championships. She is also a 2x award winning Actress as well as a former professional Triathlete (Sprint and Olympic distance). We would like to add, Angela is a real person, a human being who experiences disease challenges like the rest of the community. We have all heard, "But you look great!" - as a public figure she hears it more than others ... and with that comes judgment (even within our own disease community). At AiArthritis, we believe in celebrating our achievements while showing the reality of these diseases. That's why we chose Angela - she is not afraid to show the bad days, too. Thank you, Angela. If you would like to donate to this show, so we can continue inviting patient voices "to the table" as equal stakeholders in the conversations that will solve our most pressing problems, we thank you! DONATE You can view this episode, too!  All episodes from the AUTO Ball are located on our YouTube Channel, playlist: AiArthritis Voices 360 Talk Show AUTO Ball Live.  

    • 30 min
    Episode 34: EULAR 2020 e-Congress Debrief - Treatment recommendations, adherence, cardiovascular comorbidities & more

    Episode 34: EULAR 2020 e-Congress Debrief - Treatment recommendations, adherence, cardiovascular comorbidities & more

    Welcome to AiArthritis Voices 360 - the talk show hosted by the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), whose mission is to help others, like us, living with AiArthritis diseases, have a voice "at the table" alongside other stakeholders as equals, to solve problems that impact education, advocacy, and research.  This week Tiffany, Deb, and Patrice are learning while having a great time as they have been "at EULAR 2020", which was supposed to take place in Germany June 3-6, but is now ONLINE - through September 1st.  In this debrief, which is the third of four, cover the following:Award-winning abstracts - focus on working with rheumatic diseases, gut health. We talk in detail about our opinions as patients and focus on some specific projects at AiArthritis related to this topic.Patient issues with adherences to treatments: fears, side effects, pregnancy, age - interesting research! We delve more into pregnancy and age in particular - especially regarding current research that moms can be on biologics during pregnancy and the difference in those with long term disease and early on refusing to start treatments. Cardiovascular: It's not just RA, research for PsA, Axial Spondyloarthritis and others. These diseases ARE full body! Make sure you remember to take care of the whole body. EULAR 2020 Recommendations: New RA and PsA treatment guidelines, involving young people in voicing personal therapeutic outcomes interest (i.e. school, work, relationships, socializing), personalized vs precision medicine, shared-decision making, and patient concerns to address for injection therapy (steroid shots, etc).  The team will take all the information they are learning this month and open the conversation up to YOU in July. Want to "go with us" to EULAR in July? Sign up to learn more HERE. About Us. To learn more about our nonprofit, please visit www.aiarthritis.org.Donate. Want to give us a High Five, or two? Your support is vital to helping us continue our work to improve the lives of people living with AiArthritis diseases. Your generosity is appreciated! GIVE TODAY  Related Talk Show episodes: Synovial Tissue project: Episode 9 Precision Medicine vs Personalized Medicine: Mini-Episode 9Special Series - COVID-19 & AiArthritis: https://www.aiarthritis.org/covid19 Episode on pregnancy & research with Mariah Leach from Mama's Facing Forward & Linette Dyer from Mother to Baby: Episode 11Shared Decision Making and Precision Medicine: Mini-Episode 15Related Projects:Our Accumulator/Working with lack of biologics project: https://www.aiarthritis.org/accumulator Our Preparing Patients for Precision Medicine education and research project GET INVOLVED: https://www.aiarthritis.org/precision...  Want to watch the raw footage of our team recording this episode? Visit: https://youtu.be/ypw5kAW3AyU While there you can view the first two debriefs and learn more how YOU can attend conferences "with us". 

    • 53 min
    At The Table Episode 29: From Mini to Mega- Expanding the Table

    At The Table Episode 29: From Mini to Mega- Expanding the Table

    Welcome to AiArthritis Voices 360 At The Table. For our final Wednesday minisode, we have important news to share as we re-structure our podcast to expand our platform to appeal to all potential patients...and so, in turn, more voices can be "at the table". Tune in to learn more about this exciting transformation!

    • 17 min
    Episode 33: You'll always be my baby- lessons from dad

    Episode 33: You'll always be my baby- lessons from dad

    In this episode, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) reflects on her choices about motherhood. While she never felt the "mother bug" to have children of her own, failed relationships led her on the path to dedicate her life to her career - and ultimately she "birthed" this organization. Like a parent, she has given her heart and soul into its' development over these 9 years and is proud of the accomplishments she and the other patient leaders have achieved. But she also knows her work as a parent is not over, as there is still a lot of work to do to make sure it succeeds and continues to change lives well after she is gone. Like all children, they need financial support to thrive, to grow, to continue to develop, so she is calling on the public to help make that happen with a donation. Tiffany ends the episode by thanking her own dad for genetically passing down his business savvy and for being a great example of what it takes to be a parent. Donate Today! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis). Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.    

    • 19 min
    At The Table Episode 28: It's not all "Arthritis": Osteoarthritis vs. AiArthritis

    At The Table Episode 28: It's not all "Arthritis": Osteoarthritis vs. AiArthritis

    This mini-episode originally aired in our AUTO Ball LIVE event (May 16 - 20th on Facebook), but the topic is so important we turned it into a fully produced episode!Tiffany discusses the importance of raising awareness that the AUTO diseases - autoimmune and autoinflammatory diseases - that include arthritis as a major clinical component are not the same as other types of arthritis. Specific examples include osteoarthritis (due to aging, wear and tear, injury, or excessive pressure on the join), and gout. Failure to differentiate these types of arthritis leads to public confusion, and as a result family and peers may misunderstand the complexity of our challenges. Furthermore, failure to learn arthritis types can lead to delayed detection, diagnosis, and treatment which can cause unnecessary disability, poor quality of life, and inflated healthcare costs. AiArthritis has launched an AUTO + Arthritis awareness campaign that cleverly uses full body AUTOmobiles to explain our full body diseases. Doing this can differentiate them from the other forms of arthritis! as she teaches you how to creatively compare different arthritis types through Auto-themed activities. Get involved today by creating your own Auto-themed posts so together we can teach the world the differences between our diseases and others that include arthritis! #LearnArthritis 

    • 13 min
    Episode 32 Differentiating Arthritis Types - AUTO + Arthritis = Early Detection, Referrals, Diagnosis

    Episode 32 Differentiating Arthritis Types - AUTO + Arthritis = Early Detection, Referrals, Diagnosis

    Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. Differentiating Arthritis Types will help all people, with all types of arthritis, gain more understanding - and possible respect - for their condition, will increase detection and referrals, can lead to improved Quality of Life (QOL) and lower healthcare costs long term. The need to differentiate arthritis types, including the focus on a couple dozen autoimmune diseases and autoinflammatory diseases that include arthritis as a major clinical component.Over 100 autoimmune or autoinflammatory diseases, not all include arthritis. The arthritis is different from other types (like OA or gout). It also can vary in aggressiveness and degree of disease burden. For all, the arthritis differentiates these diseases from the other 100+ and that is why we need to bring light to it.It’s also equally important to teach both the public and practitioners about the differences so they do not dismiss it (i.e. you’re too young to have osteo, OR if you are older that “it’s not OA so it’s nothing) - lending to delays seeking medical attention. In this episode, we expand the conversation from patient-reported issues about the need to differentiate arthritis types to including the rheumatologist point of view. What can patients and rheumatologists do to help educate primary care physicians - and other rheumatologists - to consider the AUTO disease features + arthritis to increase detection, referrals, and diagnosis? How can organizations and patient-focused companies get involved?  This episode builds on prior conversations (The Need to Differentiate Arthritis, Typical vs Atypical, and Diagnosis STAT!) and will expand to include more stakeholder voices as we continue the discussion in future episodes - including Rheumy RoundsⓇ and with other nonprofits from around the world. The end goal is to develop materials to educate the public and practitioners about the AUTO + Arthritis diseases and, in turn, increase awareness, expedite detection and diagnosis, and lower healthcare costs associated with delays. *Rheumy RoundsⓇ is a pilot episode developed by our organization that unites patients and rheumatology professionals at the table - as equals - to discuss issues that, if solved, would improve communication and outcomes.   Who is “at the table”?Dr. Alfred Kim, rheumatologist and Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine, and founder and director of the Washington University Lupus Clinic.Suz Schrandt is a patient diagnosed decades ago with Juvenile (Rheumatoid, now called Idiopathic) Arthritis and patient engagement advocate with a health and disability law background. She recently launched a new patient engagement initiative called ExPPect and is currently serving as the Senior Patient Engagement Advisor to the Society to Improve Diagnosis in Medicine. Schrandt previously served as Director of Patient Engagement at the Arthritis Foundation, and as Deputy Director of Patient Engagement for PCORI.Tiffany is the CEO at International Foundation for AiArthritis and person living with non-radiographic Axial Spondyloarthritis and other AiArthritis conditions. She uses her professional expertise in mind-mapping, problem solving, and teaching to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.  AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis). Visit us on the web at www.aiarthritis.org

    • 1 hr 30 min

Customer Reviews

5.0 out of 5
5 Ratings

5 Ratings

RA Patient ,

Even if you don’t “do” podcasts this is a must listen to!

This podcast is groundbreaking in the field of Rheumatology. No other series brings the patients to the table, as they say, first to discuss the problems and then to follow up with other professionals to figure out solutions. Truly patients problem solving with others. Brilliant!

You Can Call Me Mom ,

Very Informative

I really enjoy listening to this podcast, and I have learned something new from each episode even though I’ve been living with RA for years. Highly recommend!

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