Ep 109: Searching for Answers: The Mystery Patient Experience and the Overlap with IgG4-RD

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

 

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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.

 

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Tiktok: @Lupus.lifestyle.lei