AiArthritis Voices 360 Talk Show

Cannabis has come a long way since we last covered it in 2020. With more patients using CBD and medical cannabis to help manage chronic pain, inflammation, anxiety, and sleep issues, it is time for an important update. In this episode, AiArthritis Health Education Manager Leila P. L. Valete is joined by co-hosts and patient advocates Eileen Davidson and Bridget Seritt for a real conversation about what has changed, what we still need to learn, and what patients should know before trying cannabis for autoimmune and autoinflammatory arthritis. The hosts explore how research, attitudes, and medical discussions around cannabis have evolved. They share their own experiences using CBD and cannabis, discuss new findings from rheumatology research, and highlight the ongoing need for better access, safety education, and provider awareness. The conversation also looks at how stigma is shifting as more patients and clinicians see cannabis as a legitimate part of symptom management rather than a last resort. Whether you’re new to the topic or already using cannabis as part of your treatment, this episode offers clear guidance, personal insight, and a thoughtful look at its role in patient care.   Episode Highlights: How conversations around cannabis and CBD have evolved since 2020 What new research says about its role in managing pain, sleep, and mental health Patient experiences using cannabis alongside traditional treatments Benefits, risks, and the ongoing debate around medical versus self-directed use How access, education, and stigma continue to shape patient choices   Links & Resources Go With Us! to EULAR 2025: Should Doctors Prescribe Cannabis for Autoimmune Disease?: https://www.youtube.com/watch?v=iw-KJWbKpuo Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org  Donate to Support the Show: 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: @Lupus.lifestyle.lei Instagram: @Lupus.lifestyle.lei   Eileen Davidson 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: Twitter: @ChronicEileen Instagram: @ChronicEileen Facebook: @ChronicEileen   Bridget Dandaraw-Seritt founded a patient based organization that advocates for access to compassionate care and provides community support. She’s a published author on therapeutic cannabis, presents at medical conferences, and is engaged in the policy making process. Connect with Bridget: Facebook: Advocates for Compassionate Therapy Now   

We have all had those moments where the healthcare system leaves us throwing up our hands and asking, WTH?! From outrageous medical bills and denied prescriptions to hours on the phone with insurance companies, people everywhere share the same frustrations. That is why AiArthritis launched the global #WTHellth?! campaign, a place to rant, connect, and turn stories into change. In this episode, Co-hosts Tiffany Westrich-Robertson and Ray Patnaude introduce the campaign and explain how your everyday frustrations with healthcare access, insurance, and prescription costs can be transformed into powerful patient experience data (PED). By collecting thousands of stories, WTHellth?! helps government leaders, policymakers, and insurers see the real barriers patients face. Whether you share your rant on social media with the hashtag #WTHellth?! or submit your story directly at www.wthellth.org, your voice matters. Together, we can turn frustration into action and make sure patients everywhere are part of the conversation about healthcare reform.   Episode Highlights: How to share your story and create impact with the #WTHellth?! campaign Common patient frustrations, from step therapy to unaffordable prescriptions How ranting together creates both emotional impact and usable patient experience data How collected stories will be used to drive healthcare reform and policy change Submit Your Patient Story: wthellth.org    Links & Resources Participate in Patient Experience Survey: https://bit.ly/PatientWhy  Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org  Donate to Support the Show: 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: 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   Ray Patnaude is a patient advocacy leader with over a decade of experience advancing patient-centered health policy and education. Living with psoriatic arthritis, he brings authenticity and passion to his work, amplifying patient voices while developing innovative educational tools for advocacy organizations worldwide. As manager of AiArthritis’ Knowledge = Empowerment program and the #WTHellth?! campaign, he drives impactful initiatives that empower patients and shape meaningful health reform.  

Due largely to a really complex healthcare system, prescription drug affordability is a growing challenge in the United States. Good news! Efforts are happening RIGHT NOW by several government representatives to try and address it. But improvements are moving forward without asking patients what prescriptions THEY can or cannot afford - and they aren’t asking WHY this is.  In this 360it spin-off episode, AiArthritis CEO, Tiffany Westrich-Robertson, and Grassroots Advocacy Manager, Vanessa Lathan, discuss the importance of understanding “the patient why” and how YOU can share your experiences TODAY to help guide the solutions.  Drawing from new data in the Ensuring Access through Collaborative Health (EACH)/Patient Inclusion Council (PIC) Coalition Prescription Drug Affordability & Unaffordability Patient Experience Project, Tiffany and Vanessa explain that the reasons behind affordability vary and all people treated by high retail cost medications should continue to share their why. Then we can collect enough voices, find enough patterns, to guide the government on how to help us. t. This broadcast highlights why patient voices must guide healthcare reform and how you can - and should - take part in the ongoing Patient Experience survey to ensure solutions reflect real experiences. If you’ve ever skipped or stretched medication, faced unexpected insurance barriers, or worried about paying for prescriptions, this episode highlights why your voice is essential in shaping solutions. This effort is led by over 80 patient organizations and groups in the USA working together. Any diagnosis, any medication, it’s not autoimmune arthritis or autoinflammatory arthritis disease only.   Episode Highlights: Why affordability isn’t just about price, but also insurance design and access. What new survey results reveal about skipped doses, Medicare challenges, and reliance on financial assistance. Why including diverse patient voices is critical to building real solutions. How you can participate in the Patient Experience survey and join ongoing efforts to improve prescription drug affordability. Participate in Patient Experience Survey here: https://bit.ly/PatientWhy    Links & Resources Patient Lead Survey Results: https://eachpic.org/each-pic-releases-results-from-patient-led-survey-on-drug-affordability/ Patient Experience Project and Link to the 10 Minute Survey: https://eachpic.org/patient-experience-project/ PIC Voices: https://eachpic.org/pic-voices/  Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org  Donate to Support the Show: 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:   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   Vanessa Lathan is the Grassroots Advocacy Manager at AiArthritis and a consultant with the Patient Inclusion Council, where she leads efforts in diversity, equity, inclusion, and accessibility. Living with Undifferentiated Connective Tissue Disease, she is passionate about advancing racial health equity and disability rights, with a focus on improving care for Black women with invisible illnesses.  

CAR-T Therapy is one of the most talked about advances in autoimmune research today, offering new hope for people living with AiArthritis diseases such as lupus, myositis, scleroderma, and Sjögren’s. In this episode, co-hosts Leila P.L. Valete, AiArthritis Health Education Manager, and Tiffany Westrich-Robertson, CEO and Original Founder of AiArthritis, explain what CAR-T is, how it works, and why it matters. They walk through the treatment process step by step from collecting a person’s own immune cells, to reprogramming them in a lab and reintroducing them so the immune system can reset. This episode highlights promising results from early clinical trials including patients reaching remission and stopping other medications, while also addressing safety, access, and what is still unknown. Whether you’re a patient, caregiver, researcher, or advocate, this episode explains what’s happening in CAR-T research and why it could represent a major shift in how AiArthritis diseases are treated.   Donate to Support the Show: www.aiarthritis.org/donate   Episode Highlights: What CAR-T Therapy is and how it works with AiArthritis diseases Why B cells are an important target in conditions like lupus and Sjögren’s Early results from clinical trials showing remission and organ improvement Safety considerations for patients in CAR-T studies Who may qualify now through trials, and what wider access could look like in the future How to stay informed on CAR-T research   Links & Resources: Sign up for Go With Us! to Conferences program: www.aiarthritis.org/gowithus Sign up for the Research Database: www.aiarthritis.org/database Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org  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:     Instagram: @lupus.lifestyle.lei      LinkedIn: https://www.linkedin.com/in/leila-pl-valete/       Facebook: @leilaaiarthritis      TikTok: @lupus.lifestyle.lei   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

In this follow-up episode, AiArthritis Health Education Manager Leila reflects on her personal pregnancy journey with lupus and Sjögren’s, while sharing key fertility and pregnancy insights from EULAR 2024. She highlights emerging research and clinical recommendations on preconception planning, navigating medication decisions, and coordinating care between rheumatologists and high-risk OB-GYNs. Leila also offers practical tips based on her own experience from managing disease activity during pregnancy to advocating for your needs throughout the journey. Join us on this episode if you’re actively planning for a family or simply want to understand how AiArthritis diseases can impact fertility and pregnancy.    Donate to Support the Show: www.aiarthritis.org/donate   Episode Highlights: Hear EULAR 2024 updates on fertility and pregnancy Learn what current guidelines say about safe medications for conception, pregnancy, and breastfeeding Understand the importance of low disease activity before and during pregnancy Hear Leila’s firsthand story of managing pregnancy with lupus and Sjögren’s Discover why early conversations with rheumatologists matter even if you’re not trying to conceive yet Explore the emotional and mental health side of pregnancy with chronic illness Get tips for building a supportive care team including maternal-fetal medicine specialists   Links & Resources Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org  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.

AiArthritis is bringing you along for the journey as part of our Go With Us! Program, this time straight from the EULAR 2025 in Barcelona. In this episode, we’re spotlighting key research updates that matter most to patients living with AiArthritis diseases. Our 'co hosts, Leila, Tiffany, Deb, and Eileen, are on the ground at EULAR, reporting back with fresh insights into patient-prioritized topics. You’ll hear how nutrition and microbiome research is shifting how we understand inflammation and autoimmune risk, why CAR T-cell therapy is creating buzz as a potential path to long-term remission, and what new research is saying about enthesitis in spondyloarthritis. Plus, learn more about the debate on the pros and cons of cannabis use for chronic pain management. This episode brings the conference experience straight to you with a focus on what it all means for real patients.   Donate to Support the Show: www.aiarthritis.org/donate   Episode Highlights: Insights from new research linking diet and gut health to autoimmune activity What CAR T-cell therapy could mean for the future of treatment A deeper look at enthesitis and how it’s being understood in spondyloarthritis How the medical community is reevaluating the use of cannabis in treatment plans.   Links & Resources Go With Us! To EULAR 2025 YouTube Playlist: https://www.youtube.com/playlist?list=PLZW5ZyvNnYl3wsrI7usV495JH2OMfUdzN Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org  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.   Eileen Davidson 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.   Tiffany Westrich-Robertson 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.   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.

Managing AiArthritis diseases are challenging but what if the entire model of care could change for the better? In this episode, Leila is joined by Dr. Jin Lee, co-founder and CEO of IMIDeology, a virtual and in-person clinic dedicated to diagnosing and treating immune-mediated inflammatory diseases (IMIDs) like spondyloarthritis, lupus, Crohn’s, and more. Dr. Lee shares her journey from caregiver to changemaker and how IMIDeology is improving access, diagnosis, and treatment through an innovative, patient-first approach. The conversation also explores chronic pain education and why it’s so often misunderstood in IMIDs. Leila and Dr. Jin Lee share how to describe IMIDs more effectively and how patients can better advocate for pain support. Plus, hear about IMIDeology’s pain management study and upcoming Autoimmune Patient Summit, designed to educate and empower the IMID community. If you’ve ever felt unheard or overlooked in your care journey, this episode offers fresh ideas, support, and a hopeful vision for the future of IMID treatment.   Donate to Support the Show: www.aiarthritis.org/donate   Episode Highlights: Learn how Dr. Jin Lee’s caregiver journey inspired the founding of IMIDeology. Understand what IMIDs are and why a multidisciplinary approach to care matters. Discover how virtual rheumatology clinics are changing access to diagnosis and treatment. Get practical advice on describing and managing chronic pain with your care team. Hear how you can participate in IMIDeology’s pain management study and upcoming Autoimmune Patient Summit.   Links & Resources IMIDeology Website: https://www.imideology.com/ Autoimmune Patient Summit: https://www.imideology.com/event-details/autoimmune-patient-summit Join the Join Management Study: https://www.imideology.com/pilotstudy Go With Us! To EULAR June 11-14 https://www.aiarthritis.org/conferences Mystery Patient Guide: www.aiarthritis.org/undiagnosed Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Cohost: 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   Dr. Jin Lee is the Co-Founder and CEO of IMIDeology, virtual and in-person clinical network dedicated to supporting patients with chronic inflammation and autoimmune conditions such as IBD & lupus. With firsthand experience navigating the healthcare system as both a patient and caregiver, Dr. Lee is a passionate advocate for those living with immune-mediated inflammatory diseases (IMIDs). Dr. Lee has worked across the healthcare ecosystem in pharma, payer, and provider innovation, leading efforts in product development and commercialization. She also invests in the future of healthcare as a limited partner in three angel funds and serves on multiple startup and nonprofit boards, including past roles with the American Heart Association and the Healthcare Businesswomen’s Association. Dr. Lee is a Presidential Leadership Scholar, selected by four U.S. Presidential Centers, and was honored as one of the “100 most impactful women and allies shaping the future of biopharma, healthcare, and life sciences” by Biopharma Leaders of Color (BLOC). Connect with Dr. Jin Lee: Website(s): https://www.imideology.com/ Facebook: https://www.facebook.com/IMIDeology Instagram: https://www.instagram.com/imideology1/ LinkedIn: https://www.linkedin.com/company/imideology/ YouTube: https://www.youtube.com/@imideology TikTok: https://www.tiktok.com/@imideology  

AiArthritis diseases can be difficult enough to manage—but what happens when the symptoms don’t fit neatly into a diagnosis? In this episode, AiArthritis Health Education Manager Leila shares her perspective on the “mystery patient” experience, those living with serious, ongoing symptoms but still searching for answers. Leila revisits key conversations from past episodes and introduces new resources, including our updated Mystery Patient Guide and the AUTO + Inflammatory Arthritis = X or YZ Project, which explores lesser-known or overlapping conditions like IgG4-related disease (IgG4-RD). She also shares the powerful story of a real mystery patient navigating the challenges of being undiagnosed for years. If you or someone you love is living in diagnostic limbo, this episode offers validation, education, and practical tools to help guide your journey and highlights why improving awareness and research for this often-overlooked community is so essential. Donate to Support the Show: www.aiarthritis.org/donate Episode Highlights: Learn why some patients remain undiagnosed for years and what defines a “mystery patient.” Hear a real patient story that illustrates the challenges of navigating misdiagnosis. Understand how overlapping conditions like IgG4-RD complicate the diagnostic process. Discover key takeaways from the IgG4-RD Educational Summit, including treatment updates. Explore tools and resources available to support those still searching for answers.   Links & Resources Mystery Patient Guide: www.aiarthritis.org/undiagnosed Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp IgG4-RD Resource :https://igg4ward.org/education-and-resources Start Your Team for World AiArthritis Day: givebutter.com/aiarthritisday25  World AiArthritis Day Information: www.aiarthritis.org/aiarthritisday   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Cohost: Leila P.L. Valete is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus & Sjögren's. 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 Leila: Tiktok: @Lupus.lifestyle.lei

Autoimmune diseases like lupus and Sjogren’s disease are often associated with joint pain, fatigue, and organ involvement, but their impact on the nervous system is less commonly discussed. In this episode, Dr. Julius Birnbaum, a leading expert in neuro-rheumatology, joins us to explore the neurological manifestations of these conditions and what patients need to know. From brain fog and memory issues to more severe complications like neuropathy, Dr. Birnbaum explains how these diseases affect the brain and nerves, why symptoms can be challenging to diagnose, and the latest advancements in treatment. If you or a loved one live with lupus or Sjogren’s and have experienced unexplained neurological symptoms, this episode provides clarity, validation, and expert insights on what to look for and how to advocate for proper care.   Donate to Support the Show: www.aiarthritis.org/donate   Episode Highlights: Understanding the link between autoimmune diseases and the nervous system. Common neurological symptoms in lupus and Sjogren’s Why neurological symptoms are often overlooked or misdiagnosed. The latest research and treatment approaches for managing neurological complications. How to advocate for proper testing and care if you suspect neurological involvement.   Links & Resources Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Cohost & Guest: Dr. Julius Birnbaum is a distinguished rheumatologist with 20 years of experience and the only physician in the U.S. trained as an internist, neurologist, and rheumatologist. He completed his medical training at Columbia, Mount Sinai, Jacobi Medical Center, and Johns Hopkins, where he later pioneered a Neuro-Rheumatology Clinic to treat complex neurological complications of autoimmune diseases. Dr. Birnbaum has authored over 30 publications in prestigious medical journals and has been a featured speaker at national and international rheumatology conferences. Currently, he serves as Associate Professor of Rheumatology at the University of Pittsburgh Medical Center (UPMC) and Division Chief of Rheumatology at UPMC Mercy Hospital, where he continues to teach and mentor medical trainees. Outside of medicine, he enjoys sports like basketball, swimming, and running, which he shares with his wife and three children in Wexford, Pennsylvania.   Connect with Dr. Birnbaum: Book: Living Well With Autoimmune Diseases: A Rheumatologist’s Guide to Taking Charge of Your Health - https://bit.ly/41XrpZR Website: https://www.juliusbirnbaum.com/   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  

Parenting is challenging, but adding a chronic illness like rheumatoid arthritis brings unique obstacles. In this episode, co-host Eileen shares her journey of raising a child while managing RA, from coping with fatigue and pain to adjusting expectations. She’s joined by her 12-year-old son, Jacob, who offers his perspective on growing up with a parent who has a chronic illness. Together, they discuss the struggles, unexpected lessons, and ways they support each other. Whether you're a parent navigating chronic illness or looking to understand its impact on families, this episode offers insight, advice, and encouragement. Donate to Support the Show: www.aiarthritis.org/donate Episode Highlights: Eileen shares her journey of parenting with RA, from early diagnosis to raising a preteen. The biggest struggles of parenting with chronic illness, including fatigue, guilt, and daily challenges. Jacob’s perspective on having a parent with RA and how it has shaped his life. The unexpected positives—how chronic illness has taught Jacob responsibility, independence, and empathy. Practical tips for parents with chronic illness, including self-care, communication, and asking for help. Links & Resources Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Connect with our Cohost: Eileen Davidson 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: Twitter: @ChronicEileen   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE    

What does it mean to be diagnosed with undifferentiated disease (UD)? In this episode, Tiffany Westrich-Robertson, AiArthritis CEO and founder, unpacks this complex diagnosis, sharing her personal journey from being a mystery patient to receiving a UCTD diagnosis. Tiffany explains how undifferentiated disease fits into the autoimmune.autoinflammatory spectrum, its implications for treatment, and why early intervention is critical. Join us on this episode to explore what undifferentiated disease means, how early treatment can improve outcomes, and the latest research shaping diagnosis and care. Tell us YOUR undifferentiated disease story: https://bit.ly/3EfuWsT Check out our social media channels for posts about UD and weigh in Sign up for our AiArthritis Research Database, where we are studying UD at www.aiarthritis.org/database Donate to Support the Show: www.aiarthritis.org/donate Episode Highlights: Learn more about undifferentiated disease, including why it’s so important to know it can be the final diagnosis OR it could branch off to a “full blown” autoimmune or autoinflammatory disease, including one of ours that include inflammatory arthritis as a major clinical component. Either way, UD IS a real diagnosis. Explore the connection between undiagnosed “mystery patients”, an undifferentiated diagnosis, and how UCTD and other undifferentiated conditions fit into the spectrum of autoimmune and autoinflammatory diseases. Understand the importance of early intervention and how it can lead to remission and improved outcomes. Discover the role of biomarkers, precision medicine, and risk stratification in guiding treatment plans. Hear how AiArthritis is advancing research and offering resources to help patients navigate undifferentiated disease.   Links & Resources Explore more from the “Go With Us to Conferences” program: www.aiarthritis.org/conferences Early Symptoms of AiArthritis Study: https://www.aiarthritis.org/Early-Symptoms-Study Go With Us to EULAR 2023 - Ig-G4, UCTD, RMDs and the Brain: https://www.youtube.com/watch?v=1w2Ouk-ItFk&t=264s Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

Join us for a special episode where we reflect on the top three most-listened episodes of 2024! Leila revisits these engaging conversations that resonated deeply with the AiArthritis community, covering mental health, navigating the patient journey, and reproductive health. These episodes highlight the challenges and triumphs of living with autoimmune diseases, offering practical strategies and heartfelt support. Whether you're a patient, caregiver, or ally, this roundup of impactful discussions provides valuable insights and inspiration to carry into 2025. Donate to Support the Show: www.aiarthritis.org/donate Episode Highlights: Mental Health and Autoimmune Diseases: Explore how autoimmune diseases impact mental health for patients and caregivers, including strategies to manage stress, anxiety, and emotional challenges. Discover practical self-care techniques, mindfulness practices, and tools to promote emotional resilience. Navigating the Patient Journey: Learn about the Patient Journey resource, designed to help individuals navigate every stage of their autoimmune disease experience, from diagnosis to remission. Find guidance on managing symptoms, communicating with healthcare providers, and accessing support networks. Reproductive Health and Autoimmune Diseases: Gain insights into how autoimmune diseases can affect reproductive health, including safe birth control options and the impact of medications on fertility. Learn about resources and expert advice for planning pregnancies and managing reproductive challenges. Links & Resources Explore more from the “Go With Us to Conferences” program: www.aiarthritis.org/conferences Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

In this episode, our co-hosts share key takeaways and important updates from the American College of Rheumatology (ACR) Convergence 2024. Leila, Tiffany, Cristina, and Deb discuss cutting-edge therapies, chronic pain management strategies, and groundbreaking research on conditions like lupus, Sjögren’s, and psoriatic arthritis. Join us for an insightful and empowering conversation that highlights the strides being made in the AiArthritis community.   Donate to Support the Show: https://www.aiarthritis.org/donate  Episode Highlights Discover how innovative CAR-T treatments are paving the way for remission breakthroughs in autoimmune diseases. Learn surprising insights about how obesity influences inflammation and disease progression. Get practical strategies from Stanford’s renowned self-management program to take control of your pain. Explore cutting-edge imaging techniques and therapies that offer new hope for early diagnosis and better care. Find out how menopause impacts autoimmune patients and the tools available to navigate this life stage.   Links & Resources Explore more from the “Go With Us to Conferences” program: www.aiarthritis.org/conferences Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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

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

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.

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! 

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-rated show on Feedspot! 

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! 

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!