AiArthritis Voices 360 Talk Show

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.

They discuss the preparations they navigated before surgery, the challenges they faced with doctor clearances and insurance, and provide valuable insights for fellow AiArthritis patients, including the crucial questions to ask healthcare professionals. Listen in to gain a unique perspective on surgeries with AiArthritis diseases and discover firsthand the resilience and strength that arise from these experiences.

Share your questions here: [email protected]

Episode Highlights:

• What surgeries each co-host has had and whether they are related to their AiArthritis disease
• What preparation is required before surgeries with an AiArthritis disease
• What questions patients should ask their doctors to prepare for surgery
• Co-hosts share their recovery journey

Meet Our Co-Hosts:

• Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.

Connect with Leila:

Instagram: @lupuslifestyle.lei

LinkedIn: www.linkedin.com/in/leila-lagandaon

Facebook: @leilaaiarthritis

TikTok: @lupuslifestyle.lei

• Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.

Connect with Deb:

• Facebook: @deb.majcherconstien
• Instagram: @debconstien
• Twitter: @debconstien

• Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities

Connect with Kerry:

Instagram: @buttahflyk

Twitter: @buttahflyk

Facebook: @floatlikeabuttahfly

Donate to Support the Show: https://www.aiarthritis.org/donate

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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 ([email protected]). Be sure to check out our top-rated show on Feedspot!

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

What do patients need to know about the upcoming changes to biosimilars and interchangeability in 2023? 

In this episode, Tiffany is joined by esteemed guest experts Michael Reilly, Dr. Ralph McKibbin and Andrew Spiegel to explore the crucial distinctions between the interchangeability designation, automatic substitution, and non-medical switching. Gain valuable insights into how these differences impact patients not only in the USA but also on a global scale.

In addition, our guests discuss the latest proposed bills in the US regarding biosimilar the interchangeability designation, offering expert perspectives on the legislative developments and their implications for patients and healthcare providers alike.

Join us on this episode as we explore the latest updates in biosimilars and share ways to raise your voice against non-medical switching without physician involvement.

Episode Highlights : 

• What is the difference between Interchangeability, Automatic Substitution, and Non-Medical Switching?
• Latest proposed legislation regarding the interchangeability designation
• The importance of physician involvement in biosimilars interchangeability
• What is the chance of original biologic failure if you fail the biosimilar? (and other patient submitted questions)
• Updates on biosimilars advancements in the US and around the world 
• What are Automatic Substitution Laws?
• How to become involved in the fight against the new legislation proposed to remove “the interchangeability designation” protections in switching 

Resources Mentioned In This Episode:

• AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars 
• EMA - What Is A Biosimilar : https://www.ema.europa.eu/en/human-regulatory/overview/biosimilar-medicines-overview
• Europe Interchangable: https://www.ema.europa.eu/en/news/biosimilar-medicines-can-be-interchanged 
• FDA Resources: https://www.youtube.com/watch?v=i0IJg511J5Q ; https://www.youtube.com/watch?v=ooP7djSgtBE 
• Video- Dr. McKibbin discusses survey findings and importance of interchangeability: https://youtu.be/R9ULgUQEcZ 
• Video: Dr. McKibbin presents a poster based on the 2021 US Physician Survey data https://youtu.be/mhL_EZsbSpE  also short and straightforward - the poster: https://safebiologics.org/wp-content/uploads/2022/07/DIA2022-Poster-FNL.pdf 
• ASBM Survey Findings: https://gabi-journal.net/us-prescribers-attitudes-and-perceptions-about-biosimilars.html  
• Link to All ASBM Surveys, including Australia, Canada, Europe, Latin America, US: https://safebiologics.org/surveys/ 

Meet Our Co-Hosts & Guests: 

• 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

• Ralph McKibbin, MD, FACP, FACG, AGAF  is the Chairman of Alliance for Safe Biologic Medicines. Dr. McKibbin is a practicing gastroenterologist at Blair Gastroenterology Associates in Altoona, PA. He is past president of both the Pennsylvania Society of Gastroenterology and of the Digestive Disease National Coalition (DDNC). He sits on the Member Advisory Panel of the Pennsylvania Medical Society; and is a member of the Pennsylvania State Cancer Control Consortium. Dr. McKibbin has written extensively on the issues of non-medical switching and insurance industry utilization management techniques including step therapy and copay accumulator adjustments.
•  
• Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance and was longtime board member of the Alliance became CEO in January of 2008 and ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.

• Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly served as the associate deputy secretary at the U.S. Department of Health and Human Services (HHS) from 2005-2008 responsible for policy development and implementation, as well as regulatory oversight for issues involving CMS and the FDA. In addition to serving as the associate deputy secretary, Mr. Reilly served as a senior advisor to the assistant secretary for public affairs and the assistant secretary for planning and evaluation at HHS from 2002-2005. Mr. Reilly has been quoted in a series of FDA publications and co-authored many articles on biosimilars for the Generics and Biosimilars Initiative Journal. He has also presented to health regulators worldwide, including the Australian TGA, Health Canada and the World Health Organization (WHO).

Donate to Support the Show: https://www.aiarthritis.org/donate 

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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 ([email protected]).  Be sure to check out our top-rated show on Feedspot!

Are you tired of feeling frustrated and unheard when it comes to your doctors, your disease, and all the challenges that come with it? Wish you had a platform to let it all out and find understanding?

Welcome to AiArthritis Rant Discussions - Inspired by Am I The @$$hole? Brace yourself for a new series that will give you a voice and an outlet to vent your frustrations. In this episode, our co-hosts Leila, Charis, and Patrice dive into the rants submitted by our AiArthritis community and they'll react, comment, and delve into topics that resonate with so many.

From stories of triumph over disease denial to the maddening experience of feeling invisible while in pain, this episode covers it all. Get ready to join us as our co-hosts fearlessly read aloud submissions from the AiArthritis community, sharing rants, vents, and personal stories. Together, they'll explore the burning question: Are you the @$$hole?

If you would like to share your own rant with us for the next episode in this series, submit it here! www.AiArthritis.org/Rant

Episode Highlights: 

• Co-hosts react to rant submissions from our AiArthritis community 
• Overcoming disease denial
• How to handle being mistaken for looking “healthy”
• How to explain your pain and symptoms when you have “standard level” test results 
• Dealing with adverse reactions to medication from your doctor
• Join our next series by submitting your own AiArthritis rant! 

Our Co-Hosts:

• Leila is the Health Education and Engagement Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.

Connect with Leila:

    Instagram: @lupuslifestyle.lei

     LinkedIn: www.linkedin.com/in/leila-lagandaon

      Facebook: @leilaaiarthritis

     TikTok: @lupuslifestyle.lei

Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker and model living with many conditions including Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis’ multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people. Charis’ story is regularly featured internationally in media outlets and in the documentary: "Becoming Incurable." In addition to Charis' leadership on patient advocacy organization committees and regular speaking engagements about health and disability, they boast bylines in HealthCentral, Healthline, and Business Insider; including cover stories for Arthritis Today and Spondylitis Plus magazine; and they have been awarded by the Arthritis Foundation and Spondylitis Association of America for their work on legislative advocacy for state and federal policy efforts.

Connect with Charis:

Twitter: @beingcharisblog 

Tikok : @beingcharisblog

Facebook: @beingcharis

Patrice was diagnosed with Polymyalgia Rheumatica. Patrice has been in remission off and on during these last 11 years. Patrice also has had several comorbidities: severe hearing loss which resulted in her now wearing hearing aids, a Baker's Cyst, a vein ablation, plantar fasciitis, pseudo gout, and she also has osteopenia. Patrice has been a volunteer with AiArthritis for over 2 years and has been co-host and a host for the podcast several times. Patrice went to EULAR virtually with AiArthritis in 2020 and 2021 and attended the virtual ACR conference in 2021 with AiArthritis.

Connect with Patrice:

Facebook : @PatriceJohnson

Twitter: @patrice.johnson315

Instagram: @patrice.johnson315

Donate to Support the Show: https://www.aiarthritis.org/donate 

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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 ([email protected]).  Be sure to check out our top-rated show on Feedspot!

In this episode, Tiffany will discuss how different organs can be impacted by the disease and the difference between an organ being part of a disease and being a comorbidity. Tiffany will be exploring some examples of organs being affected in various diseases such as eyes, heart, gastrointestinal, and kidneys, as well as a newer autoimmune disease, IgG4, that is commonly being diagnosed for patients alongside their AiArthritis disease. It is crucial for patients to be proactive in their healthcare by asking their healthcare provider about organ involvement - as part of their disease or as a potential comorbidity- and what steps they can take to next manage their health.

This episode is just the start of this conversation! Tiffany will be joined by Eileen and Deb at EULAR 2023 in Milan, Italy, as part of our “Go With Us!” To Conferences program. While there we will be recording updates for you from all sessions that cover this topic, which will be available soon after on our YouTube channel/Go With Us! to EULAR 2023 playlist. 

• Want to get insider information from our visit to EULAR 2023 and first notification of new materials we create from attending? Sign up at https://www.aiarthritis.org/conferences
• Share your AiArthritis disease comorbidities questions with us here! [email protected] Subject: Comorbidities

Episode Highlights: 

• Understanding the complexities of comorbidities with AiArthritis diseases 
• Sharing the different comorbidities that commonly occur with AiArthritis diseases 
• Learn which organs are commonly affected by comorbidities and what your risks are 
• Understand IgG4, a newer autoimmune disease more and how it may be diagnosed alongside AiArthritis diseases 
• How to attend conferences with AiArthritis and learn more about comorbidities 
• Learn more about your AiArthritis disease by joining us at conferences, sharing your questions, joining AiArthritis Voices service or participating in the AiArthritis Research Database

Our Co-Hosts:

• 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

Donate to Support the Show: https://www.aiarthritis.org/donate 

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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 ([email protected]).  Be sure to check out our top-rated show on Feedspot! 

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.

They discuss the emotional toll that comes with being a mystery patient, including the frustration, anxiety, and uncertainty that can linger for months or even years. We also explore the physical consequences of delayed diagnosis and the correct treatment.In addition, our co-hosts explore the importance of sharing our mystery patient stories to learn from one another, help ease the burden of being a mystery patient and provide support to others along the journey.

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.

Episode Highlights: 

• What is a mystery patient?
• Kerry, Kelly and Tiffany share their own personal stories of their mystery patient journey and the impacts of a delayed diagnosis.
• The importance of sharing your diagnosis journey story so we can learn from each other and understand how to help others along in this process.
• The mental and physical toll that occurs with a delayed diagnosis 
• Is it ethical to treat Undifferentiated Diseases if it can be treated other ways?
• How sharing your story can help uncover the best questions to ask during your doctor visits

Our Co-Hosts:

• 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 was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities

• Connect with Kerry:
  •     Instagram: @buttahflyk 
  •     Twitter: @buttahflyk 
  •     Facebook: @floatlikeabuttahfly

• Kelly Conway is a speech-language pathologist, author/blogger, and a patient advocate.  She has been living with autoimmune arthritis since age 14 but wasn’t formally diagnosed until age 32.  That diagnosis has changed more than 5 times over the past 18 years.  Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy.
• Connect with Kelly:
  • Facebook: @Lolabellaquin
  • Twitter: @Lolabellaquin

Donate to Support the Show: https://www.aiarthritis.org/donate 

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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 ([email protected]).  Be sure to check out our top-rated show on Feedspot! 

Have you or your family been affected by juvenile arthritis? On this episode, Tiffany is joined by Rochelle Lentini, CEO and President of Purple Playas Foundation, who have united with other specialists and families to identify additional tips to improve communication.

During this episode, Rochelle and Tiffany discuss this new collaboration project between AiArthritis and Purple Playas Foundation, along with Rheumatology Nurses Society and Novartis, to create discussion aids and question guidance to help families improve communication with all the professionals they meet along the way. 

Tiffany and Rochelle also provide suggestions that can offer some hope to families struggling to get answers. If you would like to share your story, insights, or recommendations to help us create these new tools to help those navigating through their Juvenile Arthritis journey, please fill sign up using our Google form at www.aiarthritis.org/jiacommunication

Episode Highlights: 

• Rochelle shares the difficult, frustrating, and lengthy diagnosis process for her son’s Juvenile Arthritis 
• Common symptoms to look out for with Juvenile Arthritis 
• What types of doctors you might see along the diagnosis process
• Importance of symptom tracking with your children to provide as much details and data to your physician as possible
• Tips on best questions to ask your doctor when seeking a diagnosis
• How to improve patient-doctor communication for better understanding on both sides
• How to communicate with your child and give them a voice when interacting with their doctor
• Purple Playas and AiArthritis are coming together to collaborate on new resource tools for parents and children seeking a Juvenile Arthritis diagnosis
• How to get involved in the new resource tool and share your insights and recommendations for improvements 

Thank you to Novartis for supporting the Journey Improvement Aids (JIAs) for Juvenile Idiopathic Arthritis (JIA) - Detection, Diagnosis, Treatment project. 

Our Co-Hosts:

• Tiffany is the CEO of the 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

• Rochelle Lentini, M.Ed. is the CEO/President of the Purple Playas Foundation and an early childhood education national consultant/trainer. She has RA and her son has juvenile arthritis, hypogammaglobulinemia, and other overlapping conditions. Rochelle has over 40 years of experience working with children with disabilities and their families and is a nationally recognized speaker. Her passions include family-centered support, inclusion, and inspiring hope for kids with chronic illnesses. 

Connect with Rochelle:

•     Facebook : @PurplePlayas

Donate to Support the Show: https://www.aiarthritis.org/donate 

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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 ([email protected]).  Be sure to check out our top-rated show on Feedspot!

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 being 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 

Links Mentioned: 

Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu

• 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

• Leila is the Health Education and Engagement Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.

Connect with Leila:

    Instagram: @lupuslifestyle.lei

     LinkedIn: www.linkedin.com/in/leila-lagandaon

      Facebook: @leilaaiarthritis

     YouTube: LupusLifestyle.Lei

     TikTok: @lupuslifestyle.lei

Donate to Support the Show: https://www.aiarthritis.org/donate 

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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 ([email protected]).  Be sure to check out our top-rated show on Feedspot! 

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, we highlight the importance of active listening and communication during office visits. Join us on this episode to hear more insights, research and information on best practices to improve your experiences as a doctor or patients. 

If you are interested in sharing your patient experience for our new Ebook, send your stories over to aiarthritis.org/gbu 

Episode Highlights: 

• AiArthritis is creating an Ebook with a collection of patient stories of the good, the bad and the ugly to study these interactions and help improve patient care.
• Deb, Tiffany and Dr. Al Kim share their experiences with undiagnosed and misdiagnosis and patient care 
• Importance of active listening as a physician so you can work together to find a proper diagnosis or treatment  
• How best to set expectations as a physician for treatment options 
• Importance of doctors managing their emotional reserve when seeing patients in the office daily 
• Best practices at building better doctor-patient communication in the office 

Links Mentioned: 

Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu

• 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

Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.

Connect with Deb:

• Facebook: @deb.majcherconstien
• Instagram: @debconstien
• Twitter:  @debconstien

Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim’s research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE.

Connect with Dr. Al Kim

Instagram: @washulupusclinic

Twitter : @AlHKim

Donate to Support the Show: https://www.aiarthritis.org/donate 

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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 ([email protected]).  Be sure to check out our top-rated show on Feedspot! 

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 create recommendations to improve office communications (citing YOUR examples!) 

During this episode, Kerry Wong and Tiffany Westrich-Robertson share their experiences as patients and Dr. Lisa Zickuhr shares her perspective as a physician. Together on this episode, we highlight the importance of communication, compassion and openness in bettering patient-doctor relationships. 

IF YOU ARE A PATIENT/FAMILY OR RHEUMATOLOGIST, PLEASE SUBMIT YOUR STORIES FOR THIS PROJECT AT https://www.aiarthritis.org/gbu

Episode Highlights: 

• AiArthritis is creating an Ebook with a collection of patient stories of the good, the bad and the ugly to study these interactions and help improve patient care.
• Kerry, Tiffany and Dr. Lisa Zickuhr share their experiences with undiagnosed and misdiagnosis and patient care 
• How a doctor can approach a patient who they are unable to diagnosis in the beginning stages 
• Patients need to be receptive to a physician's message as much as a physician needs to be empathetic to the patient
• The importance of knowing what to do next or monitor for if you’re tests come back negative so the patient doesn’t feel left without any direction
• Information sharing between the doctor and patient can be the difference between a bad and good interaction even without diagnosis

Links Mentioned: 

Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu

• 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 was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities

Connect with Kerry:

    Instagram: @buttahflyk 

    Twitter: @buttahflyk 

    Facebook: @floatlikeabuttahfly

• Dr. Lisa Zickuhr 

Dr. Zickuhr is a rheumatologist and clinician educator who devotes half of her time to caring for patients with autoimmune rheumatic diseases and half to educating physicians in training. Her clinical interests lie in treating patients with systemic lupus erythematosus and other related conditions. She also cares for patients using telemedicine and is interested in the best ways to teach health care professionals how to communicate with and examine patients virtually.

Connect with Dr. Lisa Zickuhr:

      Instagram: @washumedicine

      Twitter : @WUSTLmed

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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 ([email protected]).  Be sure to check out our top-rated show on Feedspot!