AiArthritis Voices 360 Talk Show

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.