Welcome to part 2 of the Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we are creating an Ebook with a collection of all your stories. During this episode, Deb Constein and Tiffany Westrich-Robertson share their experiences as patients and Dr. Al Kim shares his perspective as a physician. In addition, ...
Jan 01, 2023•43 min•Ep. 112
Welcome to another Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we will be collecting YOUR stories and examples of Good, Bad, and just downright Ugly office visits. We will turn this collection into an eBook and AiArthritis (patients) and rheumatologists will read your submissions and work together to...
Dec 04, 2022•46 min•Ep. 111
Patient involvement in research is key to developing knowledge and understanding around the many AiArthritis diseases. As a person living with AiArthritis diseases, there are lots of ways you can get involved with patient research such as clinical trials, surveys, focus groups, data banks and more. You can even elevate your participation through conference attendance and being part of the research team! In this month’s episode, we join our co-hosts Tiffany, Deb, Kerry and Eileen, all living with...
Nov 05, 2022•45 min•Ep. 110
This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process . DEIA : Diversity, Equity, Inclusion, and Accessibility. Each of these elements that affect patients daily should be considered when thinking about patient diagnosis, physician care, treatment plans, research, lifestyle choices, and societal inclusion. In this month’s episode, we join Tiffany from AiArthritis, Estela Mata from Looms 4 Lupus, and Charis Hill - disability activ...
Oct 02, 2022•1 hr 3 min•Ep. 109
This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process . As more treatment options are moving towards Biosimilars, many questions are being raised by patients. What are Biosimilars? Are they safe and effective? Are there downsides? Upsides? What are doctors' opinions on Biosimilars? What should I do if I am switched to a Biosimilar? These are all questions that are at the forefront of our minds when living with AiArthritis disease...
Sep 04, 2022•56 min•Ep. 108
This episode is a Step 5 - a revisit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process Over the last couple of years, the world has watched as COVID-19 has evolved into variants that differ slightly from the original virus. We’ve seen vaccinations and boosters work, yet we also know that new strains are somewhat resistant to high level protection. COVID treatments have emerged to help those who are immunocompromised - like those with AiArthritis diseases who are on imm...
Aug 07, 2022•1 hr 3 min•Ep. 107
This episode is a Step 2 - put the topic on the table for the 1st time - in our 6 Step Patient-Led Problem Solving Process In this episode Tiffany, Deb, and Bridget talk about personalized therapy, or complimentary, non-pharmacologic options, that are being researched and added to new recommendations for full disease management. We often talk about the importance of Precision Medicine (which involves finding the best pharmacologic treatment for each person’s individual needs), but as we, as pati...
Jul 03, 2022•1 hr 2 min•Ep. 106
This is a Step 5 Episode* In this episode, Tiffany, CEO of AiArthritis, is joined by Catherine Ames, from the Young Patients’ Autoimmune Research & Empowerment Alliance, both persons living with AiArthritis diseases and both who attended the 16th Annual Personalized Medicine Conference in May 2022. Precision Medicine (PM) may currently be in the cancer space, but it’s quickly moving into the autoimmune/autoinflammatory space and there are some things they want you to know. What is it? Why is...
Jun 05, 2022•1 hr•Ep. 105
In this revisit to the table (Step 5 in our problem-solving process), Tiffany, Katie, Effie, Eileen, and Kerry discuss the many layers around the word “arthritis” including: 1) Misunderstandings around the word that can lead to delays in diagnosis, family and friend judgements, 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 abou...
May 01, 2022•1 hr 5 min•Ep. 104
Join Tiffany and Deb, both persons living with AiArthritis diseases, then Tiffany and John O'Brien, CEO of the National Pharmaceuticals Council, as they put the topic of importance of innovation & treatment access in research and public policy 'on the table'. Learn how YOU can join efforts to impact change! Who is 'at the table'? Tiffany Westrich-Robertson, CEO AiArthritis, person living with non-radiographic axial spondyloarthritis Deb Constien, AiArthritis Volunteer, person living with rhe...
Apr 03, 2022•1 hr 13 min•Ep. 103
A revisit to the table with Deb Constien, Estela Mata, and Tiffany Westrich-Robertson as they continue discussing the dynamics of support - including needs of the patient as well as others in the patient's support circle. Building on Episode 43 and Episode 48, they start a support tracking tool to help patients and families/friends better assess their needs and how, together, we can work to address them! You're invited to help us continue developing this aid - find out how! *All our main 1st Sun...
Mar 06, 2022•56 min•Ep. 102
In this episode, AiArthritis CEO and person living with Axial Spondyloarthritis - Tiffany Westrich-Robertson - and Dr. Lisa Zickuhr - rheumatologist from Washington University - continue the conversation around shared-decision making and its importance around patient-rheumatologist communication. They focus on a research project both are involved in, and that YOU can join! The project aims to explore patient-reported and rheumatologist-reported barriers to virtual care and, in turn, work towards...
Feb 06, 2022•45 min•Ep. 101
In this episode, Tiffany Westrich-Robertson (AiArthritis CEO) and Katie Simons (Senior Programs & Communications Manager) talk about the heart and soul of our organization - the volunteers! Meet five volunteers from around the world - Deb, Katie, and Leslie from the United States, Pooja from India, and Judy from Australia - hear from them just how much they've accomplished by joining our team and the impact they've helped us achieve! Learn more about many of our programs and ways YOU can get...
Jan 02, 2022•58 min•Ep. 100
This week join your patient co-host Danielle Dass as she reports back on her experience attending an American Food and Drug Administration (FDA) Public Meeting on behalf of the International Foundation for Autoimmune and Autoinflammatory Arthritis. The meeting was intended to gather information from patients, medical professionals, and industry personnel about the accessibility and utility of safety communications regarding medical devices to better inform FDA practices. The mission of AiArthrit...
Dec 10, 2021•18 min•Ep. 53
In this episode, AiArthritis CEO - and person living with axial spondyloarthritis - throws a topic on the table that everyone can relate to...ranting. We all experience situations of frustration, when something we believe in, we want to happen, we wish could be different hits the point where we must vent. Sometimes that vent is to ourselves, other times it's public for all to see. We rant for support, to bring change, to be heard, or to get something off our chest. Regardless of the reason, some...
Dec 05, 2021•24 min•Ep. 99
This week join your recurring patient co-hosts Tiffany Westrich-Robertson, Katie Simons, and Deb Constien as they discuss the importance of making informed decisions in the management of aiarthritis diseases in unprecedented times. Our hosts will tackle this issue - as well as the related Actemra shortage, which is forcing patients, like Deb, off of the medications that work best for them in order to accommodate hospitalized COVID patients (most which are unvaccinated). In order to participate i...
Nov 07, 2021•58 min•Ep. 98
This week join your patient co-hosts Tiffany Westrich-Robertson, Cheryl Koehn, and Maarten de Wit as they introduce us to the Pathway of Patient Engagement in Rheumatology Research. Tiffany is the founder and CEO of AiArthritis. Cheryl Koehn is the founder and President of Arthritis Consumer Experts - Canada’s largest patient organization. Maarten is the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology). Tiffany, Cheryl, and...
Oct 03, 2021•50 min•Ep. 97
This week join your recurring patient co-hosts Katie Simons and Deb Constien as they discuss the experience of being diagnosed with arthritis as a juvenile and the importance of differentiating between the different types of AiArthritis diseases. Katie is the Senior Program and Communications Manager for AiArthritis and a patient living with inflammatory arthritis. Deb is a dietitian, an experienced patient advocate and ambassador for the AiArthritis community, and a patient living with inflamma...
Sep 05, 2021•40 min•Ep. 96
In this episode, Tiffany, Deb, Patrice, and Katie - all persons living with AiArthritis diseases - attended the 2021 European Alliance of Associations for Rheumatology (EULAR) Scientific Congress and convened several times over a few weeks to review the sessions most relevant to our community and to the work we do at our organization. The sessions reviewed in this segment involved "patient-rheumy communication", which we were happy to see covered so much at the conference! So, while historically...
Aug 01, 2021•28 min•Ep. 95
This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis), and recurring 2021 patient co-host Deb Constien as they welcome two special guests to the table for a new episode of our Special Series on COVID-19. They are joined today by two practicing adult rheumatologists: Dr. Al Kim ("Al") of the Washington University School of Medicine and Dr. Jeff Sparks ("Jeff") of the Harvard School of Medic...
Jul 04, 2021•29 min•Ep. 94
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, Patrice Johnson, Katie Simons, and Leslie Rott Welsbacher as they brief our AiArthritis patient community on the first day of EULAR 2021. Tiffany, Deb, and Katie are the core team members attending the conference, but as part of our "Go with Us! to Conferences" program, we have invited three patients to be part of the experience, too! Joining us for this debrief are Patrice Johnson and Leslie Welsbacher. Patients are ...
Jun 06, 2021•1 hr 6 min•Ep. 93
This week join your patient co-hosts Tiffany Westrich-Robertson and Deb Constein as they discuss AiArthritis’ 2021 Annual Fundraising Effort: The Charity Talk. Since many of the members of the AiArthritis community are unable to walk long distances, AiArthritis decided to host a Charity Talk in lieu of the traditional Charity Walk. The purpose is to raise awareness, educate the public about our diseases, and raise money to support the ongoing work our organization does to serve the 450 million p...
May 02, 2021•19 min•Ep. 92
This week, join your patient co-hosts Kelly Conway and Rick Phillips and special guest Heather Kenjorski for a frank discussion about mental health, AiArthritis patients, and the COVID-19 pandemic. Kelly is a co-founder of AiArthritis and the author of the blog As My Joints Turn: My Autoimmune Soap Opera , as well as a recurring co-host for AiArthritis Voices 360. Rick is the founder of RA Diabetes, a website devoted to people who have both Rheumatoid Arthritis and Type I Diabetes and a returnin...
Apr 04, 2021•53 min•Ep. 91
This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of The International Foundation for Autoimmune and Autoinflammatory Arthritis and the AiArthritis Voices 360 Talk Show. The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. We do this by enga...
Mar 21, 2021•19 min•Ep. 90
This week join your patient co-host Deb Constien as she reports from the 2020 American College of Rheumatology Conference on Dietary Modifications and the Microbiome as potential future therapeutic options for the treatment of AiArthritis diseases. Deb is a medically retired registered dietitian who has been living with Rheumatoid Arthritis for 39 years. She attended two fascinating sessions on these topics at the 2020 ACR Conference and gives a State of the Research presentation for all of us w...
Mar 07, 2021•22 min•Ep. 89
This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis, and Kelly Conway, co-founder of AiArthritis and author of the popular blog As My Joints Turn: My Autoimmune Soap Opera, as they welcome three special guests to the table for a new episode of the Voices 360 Special Series: Rheumy Rounds. They are joined today by three practicing adult rheumatologists: Dr. Al Kim of the Washington University School of...
Feb 24, 2021•1 hr 7 min•Ep. 88
We are excited to announce the return of our Rheumy Rounds episode series, starting with a special episode release this Wednesday, February 24th! Joining us at the table are Dr. Al Kim, Dr. Vibeke Strand, Dr. Jeffrey Sparks, and returning co-host Kelly Conway - facilitated by patient host, Tiffany Westrich-Robertson (CEO of AiArthritis). In this special episode, we will be diving deeper into the perceived barriers of vaccination from both a patient perspective as well as that of the rheumatologi...
Feb 21, 2021•10 min•Ep. 87
This week join your patient co-hosts Tiffany Westrich-Robertson, Charis Hill, Richard Howard, and Jennifer Walker for a round table conversation about the debate surrounding the nomenclature of the Spondyloarthritis disease umbrella. Tiffany is the CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis and a patient living with non-radiographic axial spondyloarthritis. Charis is a disability advocate, the author of the blog Being Charis, and a patient originally diagno...
Feb 07, 2021•1 hr 2 min•Ep. 86
This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis, and Kelly Conway, co-founder of AiArthritis and author of the popular blog As My Joints Turn: My Autoimmune Soap Opera, as they sit down with Dr. Al Kim, Rheumatologist and Founder & Co-Director of the Lupus Clinic at the Washington University School of Medicine. Today’s episode will be a heart-to-heart conversation with Dr. Kim about questions,...
Jan 24, 2021•1 hr 6 min•Ep. 85
This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for Autoimmune and Autoinflammatory Arthritis, as she gives our annual “Year End Review” reflection. In honor of this unprecedented year, this episode will not be the usual briefing on the annual accomplishments of the organization. That information is still available on our website at www.aiarthritis.org , and we will be publishing an annual report very soon. The mission of AiArthritis is to elevate ...
Dec 27, 2020•11 min•Ep. 83
