AiArthritis Voices 360 Talk Show

International Foundation for Autoimmune & Autoinflammatory Arthritis
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AiArthritis Voices 360 Talk Show

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.

  1. NOV 3

    Episode 103 - Elevating The Patient Voice

    In this episode, co-hosts Leila and Brittany dive into the power of patient voices in transforming the healthcare experience for the AiArthritis community. They bring empathy and validation to stories submitted by listeners, highlighting real struggles with insurance, pharmacy issues, and the emotional toll of chronic illness. Brittany also shares key takeaways from the recent Autoimmune Community Summit, covering practical tips for self-management, understanding the influence of environmental factors, and the importance of owning and sharing your story to drive change. This episode is packed with relatable stories, actionable advice, and encouragement for anyone navigating autoimmune challenges. Tune in for new ways to elevate your voice and join a supportive community that understands. Episode Highlights Leila and Brittany discuss the impact of elevating patient voices in the AiArthritis community. Patient-submitted stories reveal real challenges with insurance, pharmacy issues, and living with chronic illness. Key insights from the Autoimmune Community Summit highlight the importance of self-management and environmental factors. Tips on using personal stories in healthcare advocacy help patients drive meaningful change. AiArthritis’s "WTHellth" project aims to address systemic barriers in healthcare. The hosts share tools like communication aids and advocacy programs for patient empowerment.   Links & Resources Submit Your Story or Rant: aiarthritis.org/rant Patient Journey Resources: aiarthritis.org/patientjourney Advocacy Program Information: aiarthritis.org/advocacy Communication Aid for JIA Patients: aiarthritis.org/JIAcommunication Follow Our Conference Coverage: aiarthritis.org/conferences Read Our Blog for Patient Perspectives: aiarthritis.org/blog Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Co-Hosts:   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. 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.    Connect with Leila: Tiktok: @Lupuslifestyle.lei   Brittany Murray is a dedicated AiArthritis volunteer who has been living with Psoriatic disease for over 30 years. She loves to share her story to help others with AiArthritis diseases and to assist with advocacy and education work around hot topics like prior authorization and step therapy. She also started a blog and social community called ChronicDiseaseDiary to build a community of empowerment, love and support for those with chronic diseases or caretakers of those with chronic diseases.    Connect with Brittany: ChronicDiseaseDiary

    51 min

  2. OCT 6

    Episode 102 - Navigating the Patient Journey: From Early Diagnosis to Remission

    In this episode of AiArthritis Voices 360, co-hosts Leila and Eileen discuss a project focused on organizing essential resources for patients navigating the AiArthritis journey, from undiagnosed symptoms to remission. They share their personal experiences living with lupus and rheumatoid arthritis, exploring the complexities of managing chronic illness and the challenges of early diagnosis. Tune in to learn about AiArthritis’s new online social community and how you can contribute your story and help develop more resources for patients. This episode is perfect for patients and caregivers seeking guidance and support on their health journey.   Share your ideas on resources that we can add to the patient journey by emailing us at info@aiarthritis.org, submit your patient story on each different section of the patient journey and join our online social community! Episode Highlights A breakdown of the six stages of the patient journey and how resources are organized. Personal stories from Leila and Eileen on living with AiArthritis diseases. The importance of early diagnosis and how it affects long-term outcomes. Strategies for caregiver support and understanding comorbidities. Learn how to contribute your story or join the new AiArthritis social community. Resources & Links: Check out our patient resources: www.aiarthritis.org/patientjourney Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE     Connect with our Co-Hosts:   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren’s disease. 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.    Connect with Leila: Tiktok: @Lupuslifestyle.lei   Eileen is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline, Chronic Eileen or can be found being a mom to her son Jacob.   Connect with Eileen: ChronicEileen

    31 min

  3. SEP 1

    Episode 101 - "Go With Us!" to EULAR 2024

    In this episode, our co-hosts bring you an exclusive look into the AiArthritis “Go With Us!” to Conferences program. We dive deep into EULAR 2024, the European Rheumatology Research Conference, where patients and co-hosts reveal groundbreaking advancements in AiArthritis research. Discover the latest on CAR-T therapy, innovative pain management tailored for patients, the role of opioids in addressing pain and fatigue, and practical strategies for battling brain fog. Gain valuable insights and practical advice from fellow patients and experts. Don't miss this episode packed with cutting-edge information!   If you're eager for more, join us for our next journey to the ACR conference in November. Visit AiArthritis.org/conferences for more details and to sign up! Episode Highlights Overview of the Go With Us to Conferences program, which allows patients to virtually join and learn from major rheumatology conferences like EULAR and ACR.  Tiffany, CEO and person living with non-radiographic axial spondyloarthritis, discusses CAR-T therapy and its potential to achieve remission in autoimmune diseases, particularly in lupus patients. Deb, AiArthritis volunteer and person living with rheumatoid arthritis, presents on patient-tailored pain management, emphasizing multi-dimensional approaches to address different types of pain. Becky, AiArthritis volunteer and person living with Sjogren’s Disease, explores the relationship between fatigue, pain, and opioids, highlighting the challenges of treating these symptoms in autoimmune patients. Leila, AiArthritis Health Education Manager and person living with Lupus Nephritis and Sjogren’s Disease, covers cognitive dysfunction (brain fog), offering strategies for managing this common but under-discussed symptom in autoimmune diseases. Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Resources & Links: Join the Go With Us Program for ACR in November: https://aiarthritis.org/conferences Connect with our Co-Hosts: Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) 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.   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.    Deb Constien is a medically retired Registered Dietitian and a Representative for 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.   Becky Hosey is an AiArthritis volunteer, a healthcare professional, and also a person living with Sjogren's disease.

    49 min

  4. AUG 4

    100th Episode: AiArthritis Voices 360 Highlights!

    Welcome to a milestone episode of AiArthritis Voices 360 Talk Show! Join us as we celebrate our 100th episode by revisiting three of our most impactful discussions that have resonated deeply with our listeners. Episode 73: "Arthritis" Awareness - It’s Complicated! Dive into the complexities of arthritis awareness with our co-hosts as they share personal stories of delayed diagnosis and the profound impact it had on their lives. Discover why education and awareness for AiArthritis diseases are crucial in transforming patient journeys. Episode 80/81: RheumyRounds: The Good, The Bad, and The Ugly - Improving Office Visit Communication In this dynamic episode, our co-hosts are joined by Dr. Al Kim, a renowned rheumatologist, to explore the intricacies of patient-doctor communication and how it can be improved. Learn about the key elements that can enhance patient care, streamline diagnosis, and ensure appropriate treatment through effective communication strategies. Episode 90: Why Won't They Diagnose Me? Uncover the mystery patient stories shared by our co-hosts, highlighting the struggles of obtaining a proper diagnosis. This episode emphasizes the importance of access to information and relatable experiences in navigating the often complex diagnostic journey. Join us in this special 100th episode as we reflect on these powerful stories and discussions. Gain valuable insights into the significance of education, awareness, and research in the AiArthritis community. Don't miss out on this celebratory highlight reel that underscores the essential aspects of improving lives through informed conversations. Tune in and be part of the journey! And if you want to help this talk show expand to reach more people in the AiArthritis community, please donate to support us here :  https://www.aiarthritis.org/donate  Episode Highlights We revisit 3 of the most popular episode of the talk show to highlight important topics for the AiArthritis community Cohosts share their stories of delayed diagnosis and the importance of education and awareness to receive proper treatment earlier Dr. Al Kim shares about how patient-doctor communication can be improved from both the physician and patient sides.  Cohosts share stories of being a mystery patients to shed light on the diagnosis journey and help others navigate its complexities Learn how to be a part of the show and share your story!  Resources & Links: Share Your Rant Story: https://www.aiarthritis.org/rant Submit your Doctor Visit Story: https://www.aiarthritis.org/gbu Find Juvenile Communication Information Aids: https://www.aiarthritis.org/jiacommunication Submit Your Mystery Patient Story: https://forms.gle/mnM5FeS6LsLvFSiY7 Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate    Follow AiArthritis on all social media platforms @IFAiArthritis 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 (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!

    42 min

  5. JUL 7

    EP 99 - AiArthritis Diseases and Protecting Against COVID-19 in Healthcare Settings

    In this episode, co-hosts Charis Hill and Jae Walker delve into life after COVID-19, focusing on the unique challenges faced by individuals with AiArthritis diseases. They discuss the importance of continued precautions in healthcare settings, share their own personal experiences, and offer practical advice for staying safe. Tune in for an insightful conversation on navigating the ongoing reality of COVID-19 while managing chronic illnesses. Episode Highlights Understanding the ongoing complexities of COVID-19 for immunocompromised individuals and those on immune-suppressing medications. Jae and Charis share their journey living with chronic disease, their experience with COVID-19 and managing COVID prevention now. Discussion on recent public health recommendations and the importance of wearing masks, social distancing, and testing. Addressing the need for safe healthcare environments and advocating for better protections for high-risk patients. Encouraging listeners to resume mask-wearing, improve air quality, and initiate conversations with healthcare providers about safety measures. Join us for this episode to gain valuable insights and actionable steps to protect yourself and others in the AiArthritis community. Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE Resources & Links: Jae’s blog - When I Had Co-Vid: https://creakyjoints.org/living-with-arthritis/coronavirus/patient-perspectives/when-i-had-covid/ COVID Keeps Rising in Bay Area Wastewater. What to Know, From New Variants to Symptoms: https://www.kqed.org/news/11987343/covid-bay-area-wastewater-variant-symptoms-isolation-guidance CDC “People with certain medical conditions” page: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html CDC page “How to protect yourself and others” https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/prevention.html People’s CDC resource page for requesting COVID healthcare reasonable accommodations: https://peoplescdc.org/2023/05/09/ada-rights-workshop/     Connect with our Co-Hosts:   Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker, and model living with conditions such as Axial Spondyloarthritis and Ehlers Danlos Syndrome. They use narrative engagement to advance social justice for multiply-marginalized disabled people and have been featured internationally in media and the documentary "Becoming Incurable." Charis has written for HealthCentral, Healthline, and Business Insider, and has been recognized by the Arthritis Foundation and Spondylitis Association of America for their advocacy work.   Connect with Charis: Twitter: @beingcharisblog  Tikok : @beingcharisblog Facebook: @beingcharis Jae Walker, who uses they/them pronouns, is a disabled artist with multiple autoimmune diseases such as Rheumatoid Arthritis, Reynaud’s Syndrome, Asthma, Mast Cell Activation Syndrome, Small Fiber Neuropathy and more. They express their issues with chronic pain, fatigue, brain fog, loneliness, disconnect, etc by blogging and creating art for Creaky Joints. They have also exhibited artwork in New York and Michigan, as well as spoken out on the patient experience at conferences such as Medicine X. Advocacy about treating patients with compassion and humanity is a driving force behind everything they do.   Connect with Jae: Threads: @JaelehWalker  Instagram : @UnexpectedAdvocate Facebook: @UnexpectedAdvocate   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-

    55 min

  6. JUN 2

    Episode 98 - Mental Health with AiArthritis Diseases

    In this episode, our co-hosts Estela and Juana delve deep into the often overlooked but critically important topic of mental health for those living with AiArthritis diseases. They discuss the significant impact these health challenges have on both the body and the mind, supported by eye-opening statistics that 52% of patients with autoimmune diseases are diagnosed with a mental health condition within a year. Tune in to hear Estela and Juana break down the science behind these connections, share their personal experiences and provide practical strategies to manage mental health while navigating life with AiArthritis diseases.   Episode Highlights:  Defining AiArthritis diseases and their comprehensive impact on mental health Discussion on the challenges of living with unpredictable flares Juana's personal experience with rheumatoid arthritis and lupus and their impact on her mental health Importance of self-care strategies such as rest, nutrition, exercise, and mindfulness techniques. Benefits of therapy, counseling, and connecting with social support groups. Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Co-Hosts: Estela is the President and co-founder of Looms for Lupus, a nonprofit providing advocacy and support for those affected by Lupus, Fibromyalgia, and mental health issues. With over 30 years in healthcare, she currently supports private practices with electronic medical records and office workflows. Estela co-founded Looms for Lupus in 2011 after her sister's near-fatal battle with Lupus and Immune Thrombocytopenia, channeling her passion into empowering and supporting the community. She collaborates with initiatives to increase diversity in clinical trials and advocates both locally and nationally.   Connect with Estela: Facebook:@estelamata @looms4lupus Instagram: @estela_mata @looms4lupus Twitter: @estelamata @looms4lupus LinkedIn: @Estela Mata-Carcamo Website: www.looms4lupus.org   Juana is the co-founder of Looms for Lupus, a nonprofit supporting Lupus survivors, their families, and caregivers. Diagnosed with Rheumatoid Arthritis and Lupus in 2009, she facilitates bilingual support groups and advocates nationally for Lupus, Fibromyalgia, and Mental Health. Juana has served as a patient advisor, consumer advocate, and is a member of several advisory councils and task forces. Professionally, she is a Children's Social Worker for the Los Angeles Department of Children and Family Services.   Connect with Juana: Facebook: Juana Mata Instagram: @juany_mata Twitter: @Matajuanamata LinkedIn: Juana Mata   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!

    47 min

  7. MAY 5

    Episode 97 - World AiArthritis Day

    In this episode, Leila shares the exciting plans for the upcoming World AiArthritis Day on May 20th with AiArthritis. Delve into why raising awareness for AiArthritis diseases is crucial and discover ways you can actively participate on the global initiative. Through flashback segments, our co-hosts dissect the layers surrounding the term "arthritis," unraveling misunderstandings, family judgments, and the complexities of distinguishing AiArthritis from other conditions. Tune in for insightful discussions on diagnosis delays, access to treatments, fostering better health outcomes and how you can be a part of World AiArthritis Day!  Episode Highlights:  AiArthritis plans for World AiArthritis Day on May 20th How listeners can actively engage in the global initiative Common Misunderstandings of Arthritis  Significance of raising awareness for AiArthritis diseases and the complexities of distinguishing AiArthritis from other conditions. Patient insights into diagnosis delays and the effects on treatment plans.   Interested in getting involved? https://www.aiarthritis.org/aiarthritisday https://twitter.com/aiarthritisday https://www.instagram.com/worldaiarthritisday https://www.facebook.com/AiArthritisDay Fundraiser: https://givebutter.com/AiArthritisWAiAD24 Race-a-Thon: https://www.facebook.com/events/1511735302713694/   Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with 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 Disease. 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 @Lupus.Lifestyle.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: @lupus.lifestyle.lei      TikTok: @lupus.lifestyle.lei   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!

    34 min

  8. APR 7

    Episode 96 - Social Wellness with an AiArthritis disease

    In this episode, co-hosts Leila, Estela, and Kerry delve into the crucial topic of social wellness amidst living with AiArthritis disease. They explore the essence of social wellness, its significance and sharing personal insights on navigating social lives while managing health challenges. Join our co-hosts as they discuss both the supportive and challenging dynamics of maintaining an active social life with an AiArthritis disease and how online communities can positively impact social wellness. Drawing from community questions and experiences, they offer invaluable advice, practical tips, and thoughtful modifications to foster social fulfillment despite potential barriers. Tune in to learn how to prioritize social wellness in the face of chronic illness. Episode Highlights:  Definition and exploration of social wellness, emphasizing its importance in maintaining overall well-being. How social wellness can negatively and positively affect your AiArthritis disease  Discussion on the cohosts' personal experiences with their social lives and how they navigate social interactions while managing their health conditions. Insights into the reactions of family and friends to the cohosts' social needs, highlighting both supportive and challenging aspects. How you can utilize technology to connect to your community to positively impact your social life.  Answering community questions and comments regarding social wellness by sharing practical advice, tips, and modifications for fostering social fulfillment despite potential barriers.   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with 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 Disease. 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 @Lupus.Lifestyle.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: @lupus.lifestyle.lei      TikTok: @lupus.lifestyle.lei   Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories.    Connect with Kerry:     Instagram: @buttahflyk      Twitter: @buttahflyk      Facebook: @floatlikeabuttahfly      Website: http://bit.ly/floatlikeabuttahfly     Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides Lupus, Fibromyalgia and Mental Health Awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers.    Connect with Estela:        Instagram: @estela_mata @looms4lupus     LinkedIn: @Estela Mata-Carcamo     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!

    1h 1m
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About

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.

Information

  • Creator
    International Foundation for Autoimmune & Autoinflammatory Arthritis
  • Years Active
    2019 - 2024
  • Episodes
    100
  • Rating
    Clean
  • Copyright
    © Copyright 2019 All rights reserved.
  • Show Website
    AiArthritis Voices 360 Talk Show

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