The Rare Disease Nobody Talks About, Until It Stops Your Breathing
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The Rare Disease Nobody Talks About, Until It Stops Your Breathing
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ナレーター：
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著者：
Deanna Steinle was diagnosed with Generalized Myasthenia Gravis at thirty a neuromuscular disease with no cure that can affect every voluntary muscle in the body, including the ability to breathe. Today she's a rare disease advocate, speaker, and the face of the Rare Connections: GMG film produced by Alexion. Deanna and Kim talk about the crisis that led to her diagnosis, the grief of losing the life you planned, and why the people standing next to us matter as much as any treatment. A powerful conversation for every chronic illness community.
CHAPTERS / TIMESTAMPS
00:00 Meet Deanna Steinle: Advocating for the GMG Community
02:35 A Late Diagnosis: Deanna's Journey to Understanding Her Symptoms
05:00 Accepting a Life Forever Changed
06:55 What Rare Disease Communities Have in Common
09:05 Inside the Rare Connections GMG Film
12:52 Tools Every Chronic Illness Community Can Use
14:55 Loving on Our Caregivers: The Forgotten Side of Diagnosis
19:34 Where to Watch and Connect with Deanna
CONNECT & RESOURCES
Deanna Steinle:
🔗 Instagram: Resilience is Beautiful
🔗 Facebook: Deanna Steinle
🔗 LinkedIn: Deanna Steinle
🎬 Rare Connections: GMG
The Chronic Truth Podcast:
🌐 Website: chronictruthpodcast.com
📱 Instagram: @ChronicTruthPodcast
📘 TikTok: @chronictruthpodcast
💬 Share Your Story: Testimonials
📋 Community Survey: Survey
Production Partner: Podcast Mechanic