The Rare Disease Nobody Talks About, Until It Stops Your Breathing

<p>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 <i>Rare Connections: GMG</i> 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.    <b><br /></b>CHAPTERS / TIMESTAMPS <br /><br />00:00 Meet Deanna Steinle: Advocating for the GMG Community<br />02:35 A Late Diagnosis: Deanna's Journey to Understanding Her Symptoms<br />05:00 Accepting a Life Forever Changed<br />06:55 What Rare Disease Communities Have in Common<br />09:05 Inside the Rare Connections GMG Film<br />12:52 Tools Every Chronic Illness Community Can Use<br />14:55 Loving on Our Caregivers: The Forgotten Side of Diagnosis<br />19:34 Where to Watch and Connect with Deanna<br /></p><p><b>CONNECT &amp; RESOURCES<br /><br />Deanna Steinle:<br /><br /></b>🔗 Instagram: <a rel="noopener noreferrer nofollow" href="https://www.instagram.com/resilience.is.beautiful" target="_blank">Resilience is Beautiful</a><br />🔗 Facebook: <a rel="noopener noreferrer nofollow" href="https://www.facebook.com/DeannaSteinle/" target="_blank">Deanna Steinle</a> <br />🔗 LinkedIn: <a rel="noopener noreferrer nofollow" href="https://www.linkedin.com/in/deanna-steinle-059a8446/" target="_blank">Deanna Steinle</a> <br />🎬 <a rel="noopener noreferrer nofollow" href="https://rareconnectionsfilms.com" target="_blank">Rare Connections: GMG</a><br /> </p><p><b>The Chronic Truth Podcast:<br /></b> <br />🌐 Website: <a rel="noopener noreferrer nofollow" href="http://chronictruthpodcast.com" target="_blank"><b>chronictruthpodcast.com</b></a><br />📱 Instagram: <a rel="noopener noreferrer nofollow" href="https://www.instagram.com/chronictruthpodcast" target="_blank"><b>@ChronicTruthPodcast</b></a><br />📘 TikTok: <a rel="noopener noreferrer nofollow" href="https://www.tiktok.com/@chronictruthpodcast" target="_blank"><b>@chronictruthpodcast</b></a><br />💬 Share Your Story: <a rel="noopener noreferrer nofollow" href="https://chronictruthpodcast.com/#testimonials" target="_blank"><b>Testimonials</b></a><br /><b>📋 </b>Community Survey: <a rel="noopener noreferrer nofollow" href="https://chronictruthpodcast.com/#survey" target="_blank"><b>Survey</b></a><b><br /><br /></b>Production Partner:<b> </b><a rel="noopener noreferrer nofollow" href="https://podcastmechanic.xyz/" target="_blank"><b>Podcast Mechanic</b></a></p>