In this powerful episode of Rare Awareness Radio, host Richard Juknavorian sits down with Dr. Iazsmin Bauer-Ventura, an adult rheumatologist at the University of Chicago whose work centers on idiopathic inflammatory myopathies and interstitial lung disease (ILD).
As part of our ongoing myositis series, this conversation brings a crucial clinical and research perspective to a disease that is frequently misunderstood, misdiagnosed, and underfunded.
Dr. Ventura breaks down:
- What myositis really is—and why it’s a multi-system autoimmune disease
- How muscle, skin, and lung involvement intersect in complex ways
- Why multidisciplinary care (rheumatology, pulmonology, dermatology, neurology) is essential
- Recent advances in treatment, including IVIG and promising clinical trial pipelines
- How inequities, mistrust, and insurance gaps shape patient outcomes
- The urgent consequences of declining federal research funding
- Practical, empowering advice for newly diagnosed patients and caregivers
She also shares her personal journey—from growing up in Brazil to becoming a physician-researcher at one of the nation’s leading ILD and myositis centers.
This is one of our most comprehensive and insightful episodes yet—rich with clarity, compassion, and real-world guidance for anyone affected by myositis or rare autoimmune conditions.
🌐 Learn more:
Myositis Association — myositis.org
Rare Awareness Radio — rareawarenessradio.org
