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Sjogren's Syndrome with Mimi From Florida
Manage episode 470184245 series 3485028
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In this episode of Rare Connection, Mimi shares her 20-year battle for a Sjögren’s syndrome diagnosis—a disease often misunderstood as just a "dry eye disorder" but one that led to respiratory failure and lung scarring in her case. She opens up about her journey with pulmonary fibrosis, nightly oxygen therapy, and the challenges of being taken seriously by medical professionals.
Beyond her health struggles, Mimi is an author and advocate with 33 years of sobriety. She discusses how trauma and resilience shape both her medical experiences and her work, including her books The Anatomy of an Alien and Raised by Wolves: Trapped by Demons.
Join us as we explore the intersection of rare disease, trauma, and advocacy—and what needs to change in how patients are heard and treated.
Topics We Cover:
✔️ Why Sjögren’s syndrome is more than just dry eyes
✔️ The 20-year struggle for a diagnosis and medical validation
✔️ How Sjögren’s led to pulmonary fibrosis and oxygen therapy
✔️ Medical gaslighting and the importance of self-advocacy
✔️ The link between rare disease, trauma, and resilience
✔️ Mimi’s books and her mission to empower others
🔹 Follow Rare Connection on Facebook, X, and LinkedIn to keep the conversation going!
⚠️ If you or someone you know is struggling, help is available. Call or text 988 for support—you are not alone.
Chapters
1. Sjogren's Syndrome with Mimi From Florida (00:00:00)
2. [Ad] & so much more (00:10:11)
3. (Cont.) Sjogren's Syndrome with Mimi From Florida (00:11:01)
62 episodes
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