Sjogren's Syndrome with Mimi From Florida Artwork

Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

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Rare Connection

Sjogren's Syndrome with Mimi From Florida

March 07, 2025 • Joanna • Season 4 • Episode 5

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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

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⚠️ If you or someone you know is struggling, help is available. Call or text 988 for support—you are not alone.

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