AiArthritis Voices 360 Talk Show

Chronic pain can become such a regular part of life with an AiArthritis disease that it changes your understanding of what "normal" feels like. But pain isn't always tied to active inflammation or a disease flare, and even one person can experience many different types of pain. In recognition of Pain Awareness Month, host Leila is joined by patient advocates Deb and Kerry for a candid conversation about what living with chronic pain really looks like. Drawing from their own experiences and lived experience data from the AiArthritis community, they explore the many factors that can influence pain, including fatigue, activity, joint damage, sleep, stress, and more. They also discuss how learning to recognize and describe different types of pain can help patients better communicate what they're experiencing with their healthcare team. From navigating changing pain levels to the trial and error of finding relief, this episode explores the realities of chronic pain that a number on a pain scale can't always capture. Episode Highlights Why chronic pain can change a person's perception of what "normal" pain feels like How pain can persist even when an AiArthritis disease appears well controlled What lived experience data reveals about the factors patients say influence their pain Why understanding the location, sensation, and patterns of pain can improve conversations with healthcare providers The challenges of balancing helpful movement with overexertion and recognizing when your limits have changed What years of trial and error can teach patients about managing chronic pain Why lived experiences are helping shape future AiArthritis Voices 360 conversations and resources

Exercise is one of the most recommended ways to manage AiArthritis diseases, yet for many patients, staying active can feel overwhelming. Pain, fatigue, disease flares, and mental health challenges often make the advice to "just exercise more" unrealistic. In this episode, Leila P.L. Valete and Eileen Davidson explore what research and lived experience reveal about movement, physical activity, and exercise for people living with AiArthritis diseases. Drawing from research presented at EULAR 2026, patient lived experience data, and their own personal journeys, Leila and Eileen discuss the barriers that prevent people from staying active and why movement looks different for everyone. They also explore the connection between physical activity and mental health, highlighting how anxiety, depression, and chronic pain can affect motivation while sharing practical strategies that make movement more accessible. Whether you're just getting started or adapting your routine during a flare, this episode offers realistic guidance, trusted resources, and encouragement to help you find movement that works for your body. Episode Highlights: What EULAR 2026 research revealed about exercise and non-pharmacological care Common barriers that make physical activity difficult for people living with AiArthritis diseases The connection between movement, mental health, and long-term disease management Patient experiences with adapting exercise during flares and changing symptoms Practical movement ideas and trusted resources to help you stay active safely Links & Resources Just One Move - https://justonemove.ca/ Arthritis Research Canada Education Series - https://www.arthritisresearch.ca/education-series/strong-with-arthritis/ Arthritis Foundation - https://www.arthritis.org/health-wellness/healthy-living/physical-activity/getting-started/your-exercise-solution 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: @Lupuslifestyle.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

Every year, the AiArthritis team returns from EULAR with new research, expert interviews, and important conversations. This year, they also gathered lived experience data from the community to better understand how the topics discussed at the conference compare with what patients experience every day. In this episode, host Leila P.L. Valete is joined by patient representative James Hollen to revisit the biggest themes from EULAR 2026, including fatigue, pain, mental health, and the impact of disease on work and daily life. They share what the community told us through lived experience surveys, reflect on James' first EULAR conference as a patient representative, and explore why patient voices are becoming an essential part of research conversations. Whether you followed our Go With Us! coverage or are hearing about EULAR for the first time, this episode highlights how lived experiences help shape better research, more meaningful conversations, and a stronger future for patient care. Episode Highlights: What lived experience surveys revealed about fatigue, pain, mental health, and quality of life How patient perspectives aligned with key research presented at EULAR 2026 James' reflections from attending his first EULAR conference as a patient representative Why patient voices are becoming an essential part of research and healthcare innovation How community feedback will help shape future AiArthritis Voices 360 conversations Links & Resources: Fatigue Survey: https://bit.ly/fatigueLED Fatigue EULAR: https://youtu.be/0e57fykYImc Mental Health & Exercise Survey: https://bit.ly/mentalhealthLED Mental Health & Exercise EULAR: https://youtu.be/Akc5So6ePd0 Pain Survey: https://bit.ly/painLED Pain EULAR: https://youtu.be/Y7vFImtSfBw Work & School Survey: https://bit.ly/workandschoolLED Work & School EULAR: https://youtu.be/fzygxv1CewU Cell Therapy (CAR-T) Survey: https://bit.ly/celltherapyLED Cell Therapy (CAR-T) EULAR: https://youtu.be/f7fkAK_u94o AiArthritis Talk Show Community Response Form: https://bit.ly/AiArthritisVoices360Response Playlist to All Videos: https://youtube.com/playlist?list=PLZW5ZyvNnYl1_ZCVQQCw2ucGik3rrICMP&si=pkUFTjGGA29RjbSU 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: @Lupuslifestyle.lei

AiArthritis was built by listening to patients. For more than 15 years, conversations within the community have shaped programs, resources, research initiatives, and advocacy efforts designed to improve the patient journey. In this episode, Leila and Tiffany discuss AiArthritis' next chapter and how the organization is expanding its commitment to collecting, analyzing, and acting on lived experience data. The conversation explores what lived experience data is and why it matters. Patient stories can help identify unmet needs, improve healthcare conversations, influence research priorities, and drive meaningful change. Leila and Tiffany also share how AiArthritis is creating new opportunities for patients, care partners, and advocates to contribute their experiences and ensure every voice is counted. Whether you have participated in an AiArthritis program before or are just discovering the organization, this episode offers a behind the scenes look at how patient experiences become real world impact. It also highlights new ways to get involved and help shape future programs, resources, and advocacy efforts. Episode Highlights: How sharing your experience can help improve care for future patients Why AiArthritis is expanding its focus on lived experience data Real examples of patient feedback leading to new resources and solutions New ways to participate in research and community driven initiatives What's coming next for AiArthritis Voices and patient engagement Links & Resources Mystery Patient Guide: https://www.aiarthritis.org/undiagnosed JHA/HCP Communication Toolkit: https://www.aiarthritis.org/JIACommunication Submit Your Rant: https://www.aiarthritis.org/rant WTHellth Website: https://wthellth.org/ 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 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

Vagus nerve stimulation has been a hot topic in the AiArthritis community, and for good reason. In this episode, host Tiffany sits down with Dr. Vibeke Strand, Adjunct Clinical Professor in the Division of Immunology/Rheumatology at Stanford University, to explore what VNS actually is, what the research shows, and why it could be a game changing option for people who have not found success with traditional treatments. Whether you have struggled to find a treatment that works or are simply curious about what is emerging in the rheumatology space, this episode shares useful information you can bring to your next doctor's appointment. NOTE: As of April 2026 this device is only available in the United States. We will keep you updated as it becomes available elsewhere! Episode Highlights: What VNS is and how it connects to inflammation in AiArthritis diseases How VNS differs from traditional biologics/DMARDs and whether it can be used alongside them What the research says about its effectiveness beyond just pain relief Who might be a good candidate and how to start the conversation with your care team Links & Resources 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 Dr. Vibeke Strand is an Adjunct Clinical Professor in the Division of Immunology/Rheumatology at Stanford University, where she has taught since 1993, and previously at University of California, San Francisco. Dr. Strand has also served as a consultant in clinical research and regulatory affairs to pharmaceutical and biotech companies since 1991. She has been a clinical rheumatologist for more than 40 years, previously in subspecialty practice in San Francisco, as a clinical investigator, and subsequently senior positions in clinical research at three pharmaceutical/biotech companies before embarking on her consulting practice. Among her many accomplishments, Dr. Strand has authored over 450 original publications, is a Fellow of the American College of Physicians, and a Master of the American College of Rheumatology.

Sleep problems are one of the most common and most frustrating experiences for people living with AiArthritis diseases. In this episode, Eileen Davidson breaks down why getting a good night's rest can feel nearly impossible when you're living with an AiArthritis disease, and shares what has actually helped her along the way. Eileen explores the many reasons sleep is so disrupted by AiArthritis diseases, from pain and stiffness to the role that chronic inflammation plays in interfering with the body's natural sleep cycles. She offers an honest, personal reflection on what sleepless nights really look like from a patient's perspective and why this issue deserves more attention in conversations about disease management. Whether you're lying awake wondering if anyone else understands what you're going through, or you're looking for practical steps to try tonight, this episode offers both validation and real, actionable guidance from someone who lives it every day. Episode Highlights: Why sleep is uniquely challenging for people living with AiArthritis diseases The connection between inflammation and disrupted sleep A personal reflection on what sleep struggles really feel like Small, realistic habits and strategies that can actually make a difference Links & Resources 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: 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

A new diagnosis can bring relief, fear, and uncertainty all at once. In this episode, Leila and Deb share advice from the AiArthritis community on what they wish they had known right after being diagnosed with an autoimmune or autoinflammatory arthritis disease. Leila and Deb explore the importance of trusting your body, especially when tests are inconclusive or symptoms are dismissed. This episode highlights how self advocacy, second opinions, and clear communication with your care team can shape your experience. Community members also reflect on the emotional side of diagnosis, including grief, patience, and the mindset shift that comes with learning to live with chronic illness. Whether you are newly diagnosed or supporting someone who is, this episode offers validation and practical guidance for navigating the early stages of the patient journey. Episode Highlights: Why trusting your body matters, even when tests are unclear How self advocacy and second opinions can change your care experience The emotional impact of diagnosis and the importance of grace and patience Practical tools like symptom tracking, rest, and shared decision making to support long term management Links & Resources 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: @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

Oral health is often treated as optional or cosmetic, but for people living with AiArthritis diseases, it can have a real impact on pain, fatigue, nutrition, and quality of life. In this episode, Leila and Bridget explore why oral health deserves a place in routine disease management and why so many patients are never told their symptoms are disease related. The episode looks at how autoimmune conditions and common medications can affect the mouth, from dry mouth and gum inflammation to delayed healing and increased infection risk. It also breaks down the connection between oral health, the immune system, and systemic inflammation, helping patients better understand why issues can show up even when oral hygiene is strong. Join us on this episode to hear practical, gentle strategies for protecting oral health when saliva is reduced or sensitivity is high. The discussion emphasizes adaptation over perfection and reinforces that oral health challenges are not personal failures, but part of living with complex chronic disease. Episode Highlights: Why oral health is often overlooked and why it matters in autoimmune disease How inflammation, medications, and reduced saliva affect the mouth The link between oral health and conditions like Sjögren’s, rheumatoid arthritis, lupus, and scleroderma Gentle, realistic strategies to protect teeth and gums without causing more harm Links & Resources Go With Us! To ACR 2025: Oral Health: https://www.youtube.com/watch?v=q5XlwG4cNXo See more about co-existing conditions, disease management & more www.aiarthritis.org/patientjourney 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: @Lupuslifestyle.lei 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

As we close out 2025, this special episode looks back on some of the most impactful conversations from this year. This episode reflects on key moments that captured the real experiences of people living with AiArthritis diseases and the topics patients told us mattered most. Listeners will hear powerful conversations exploring what it means to parent while managing chronic illness, the often overlooked neurological symptoms of lupus and Sjögren’s disease, and the long journey many mystery patients face searching for answers. These episodes go beyond symptoms to explore the emotional toll, physical obstacles, and systemic hurdles patients navigate, showing why knowledge and advocacy can transform the patient journey. Whether you are hearing these stories for the first time or revisiting them, this episode brings the voices, clinical insights, and lived experiences that shaped AiArthritis patients in 2025. Episode Highlights: Parenting and family life while living with chronic illness Neurological symptoms in lupus and Sjögren’s disease and why they are often missed The mystery patient experience and the impact of delayed diagnosis Why patient voices continue to drive education, awareness, and change Links & Resources Mystery Patient Guide: www.aiarthritis.org/undiagnosed IgG4-RD Resource : https://igg4ward.org/education-and-resources 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

Remission is no longer an abstract idea for people living with AiArthritis diseases. Thanks to earlier diagnosis, better treatment options, and growing global awareness, more patients are reaching remission and staying there. In this episode of AiArthritis Voices 360, Health Education Manager Leila P. L. Valete sits down with Neil Betteridge of the Global Remission Coalition to explore what remission truly means and why it is becoming a realistic goal for many. Together they unpack how remission differs from basic disease control and why that distinction is so important for daily life. They also talk through the emotional and practical impact of reaching remission, the role of early action, and the barriers that still prevent many patients from accessing timely care. The conversation highlights what sustainable remission looks like in the real world and how better education, support, and policy attention can help more people get there. Whether you are newly diagnosed or years into your patient journey, this episode offers a grounded and hopeful look at the road to remission and the steps that can make a life-changing difference. Episode Highlights: What remission really means and how it differs from basic disease control Why remission improves quality of life, mental health, and daily function Key factors that help patients reach remission including early diagnosis and timely treatment Common barriers patients face like limited access to specialists, treatment delays, and lack of information What it takes to sustain remission through monitoring, adherence, and patient support Links & Resources Global Remissions resources: www.globalremission.org AiArthritis remission information: https://www.aiarthritis.org/remission 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: @Lupuslifestyle.lei Neil Betteridge developed juvenile arthritis at age three, an experience that shaped his lifelong commitment to advocating for people with chronic diseases. He has led major patient organizations in the UK and globally, including serving as CEO of Arthritis Care and now as Senior Director of the Global Alliance for Patient Access, where he also chairs the Global Remission Coalition. With decades of experience in public affairs and patient engagement, Neil has advised health ministers, worked with the Royal College of Physicians, and held key leadership roles in international networks such as the Global Alliance for Musculoskeletal Health and EULAR. His work continues to advance policy, access, and better outcomes for people living with chronic inflammatory conditions. Connect with Neil: Website: www.globalremission.org X/Twitter: https://x.com/Neil_Betteridge

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