{"version":"1.0","type":"rich","provider_name":"Acast","provider_url":"https://acast.com","height":250,"width":700,"html":"<iframe src=\"https://embed.acast.com/$/5e8b1973372296d4689b9ae6/5f8e8117e5d13f4c1ba9badf?\" frameBorder=\"0\" width=\"700\" height=\"250\"></iframe>","title":"Lara Bloom, President & CEO of The Ehlers-Danlos Society | From Challenge Comes Opportunity","thumbnail_width":200,"thumbnail_height":200,"thumbnail_url":"https://open-images.acast.com/shows/5e8b1973372296d4689b9ae6/1603173291405-1958ca1c3ef7c726c1d290748da65254.jpeg?height=200","description":"<p>This week I had the honor of speaking with Lara Bloom, President and CEO of The Ehlers-Danlos Society. This year she was also appointed Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine.&nbsp; Lara is an expert in patient engagement and advocacy for rare, chronic, and invisible conditions as well as an international public speaker and campaigner.&nbsp;</p><p><br></p><p>Lara is all of the aforementioned things, but also a patient who lives with Ehlers-Danlos Syndrome, dysautonomia, and other comorbid conditions.&nbsp; Lara’s story is both inspiring and impressive, as she has managed to accomplish so much despite her health challenges.&nbsp;&nbsp;</p><p><br></p><p><br></p><p><strong>Some things that you’ll learn:</strong></p><ul><li>About Lara (1:20)</li><li>Recent challenges that Lara has faced separating her personal vs professional life (9:30)</li><li>Lara’s personal experience with Covid-19 (11:04)</li><li>About the Breaking Down Barriers initiative (19:08)&nbsp;</li><li>One of the hardest things that Lara deals with as a public figure. (36:02)</li></ul><p><br></p><p><strong>Some questions Bonni asks Lara:</strong></p><ul><li>How do you manage all that you do? (6:08)</li><li>What led to your diagnosis? (23:20)</li><li>What would you tell people who are in the beginning of their process and don’t have a firm diagnosis? (26:26)</li><li>Why Lara rarely sees doctors these days (29:14)</li><li>What drove you to do a marathon and how did you have the stamina to complete it? (31:43)</li><li>Looking back at your journey would you change anything? (34:50)</li><li>What is next for you and the Society? (41:50)&nbsp;</li><li>What would your My Intent bracelet say? (44:35)</li><li>What’s lighting you up right now? (47:11)</li><li>What advice can you give other people on how to best advocate for themselves? (48:25)</li><li>What does courage mean to you? (50:17)</li></ul><p><br></p><p><strong>Connect with Lara:</strong></p><ul><li><strong>Website:&nbsp; </strong><a href=\"https://www.larabloom.com/\" rel=\"noopener noreferrer\" target=\"_blank\"><strong>https://www.larabloom.com/</strong></a></li><li><strong>Instagram:&nbsp; </strong><a href=\"https://www.instagram.com/lara.bloom/\" rel=\"noopener noreferrer\" target=\"_blank\"><strong>https://www.instagram.com/lara.bloom/</strong></a></li><li><strong>Twitter:</strong>&nbsp; <a href=\"https://twitter.com/larabloom?lang=en\" rel=\"noopener noreferrer\" target=\"_blank\">https://twitter.com/larabloom?lang=en</a></li></ul><p><br></p><p><br></p><p><br></p><p><strong>Show Resources:&nbsp;</strong></p><ul><li><strong>Issues With My Tissues Documentary: </strong><a href=\"https://www.youtube.com/watch?v=wd6EojcCMDA\" rel=\"noopener noreferrer\" target=\"_blank\">https://www.youtube.com/watch?v=wd6EojcCMDA</a></li><li><strong>The Ehlers Danlos Society Website:&nbsp; </strong><a href=\"https://www.ehlers-danlos.com/\" rel=\"noopener noreferrer\" target=\"_blank\"><strong>https://www.ehlers-danlos.com/</strong></a></li><li><strong>Breaking Down Barriers Coalition: </strong><a href=\"https://www.ehlers-danlos.com/breaking-down-barriers/#:~:text=Breaking%20Down%20Barriers%20Coalition&amp;text=We%20do%20not%20accept%20inequality,affected%20by%20EDS%20and%20HSD.&amp;text=The%20Coalition%20will%20address%20inequalities,Society%20programming%20and%20advocacy%20efforts\" rel=\"noopener noreferrer\" target=\"_blank\">https://www.ehlers-danlos.com/breaking-down-barriers/#:~:text=Breaking%20Down%20Barriers%20Coalition&amp;text=We%20do%20not%20accept%20inequality,affected%20by%20EDS%20and%20HSD.&amp;text=The%20Coalition%20will%20address%20inequalities,Society%20programming%20and%20advocacy%20efforts</a></li></ul><p><br></p><p><br></p><p><br></p><p><strong>Connect with Bonni:</strong></p><p><a href=\"https://www.instagram.com/thechronicallycourageous/\" rel=\"noopener noreferrer\" target=\"_blank\">https://www.instagram.com/thechronicallycourageous/</a></p><p><a href=\"https://www.facebook.com/bonni.howard\" rel=\"noopener noreferrer\" target=\"_blank\">https://www.facebook.com/bonni.howard</a></p><p><a href=\"mailto:bonni@thechronicallycorageous.com\" rel=\"noopener noreferrer\" target=\"_blank\">bonni@thechronicallycourageous.com</a>&nbsp;</p><p><br></p><p><br></p>","author_name":"Bonni Howard"}