En busca de respuestas: La misteriosa experiencia del paciente y su relación con la enfermedad relacionada con IgG4.
AiArthritis Voices 360 Principal, Episodio completo 109
Fecha de emisión: 4 de mayo de 2025
This episode is a Step 5 as outlined in our 6 Step Patient-Led Problem Solving Process.
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.
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.
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!
Follow AiArthritis on all social media platforms
Todos nuestros episodios principales del primer domingo de cada mes son un episodio inicial para "poner el tema sobre la mesa". (Paso 2 del proceso de resolución de problemas de 6 pasos de nuestra organización) o un episodio de "revisión de la mesa" (Paso 6 en el proceso de 6 pasos de nuestra organización)donde nos basamos en un programa anterior porque hemos avanzado en el desarrollo de ayuda, herramientas o proyectos en torno al tema. (Paso 5 del proceso de 6 pasos de nuestra organización).
Tras la emisión de cada programa, ampliamos la conversación a numerosos debates en diversos formatos, a los que ahora llamamos #360its.
Agradecemos al equipo de Enfermedades Raras de Amgen su continuo apoyo a esta iniciativa.
Your Co-Hosts: Who is at the Table this Episode?
Leila P.L. Valete, Health Education Manager
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.
Pull up your seat at the table
Now it's YOUR TURN to join the conversation!
What do you think about this episode?
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Relevant Episodes & Projects
Love the show? Help us make sure we stay on the air by making a donation.
Your contribution helps us continue the work we do every day to improve the lives of millions worldwide.