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. Lara is an expert in patient engagement and advocacy for rare, chronic, and invisible conditions as well as an international public speaker and campaigner.
Lara is all of the aforementioned things, but also a patient who lives with Ehlers-Danlos Syndrome, dysautonomia, and other comorbid conditions. Lara’s story is both inspiring and impressive, as she has managed to accomplish so much despite her health challenges.
Some things that you’ll learn:
About Lara (1:20)Recent challenges that Lara has faced separating her personal vs professional life (9:30)Lara’s personal experience with Covid-19 (11:04)About the Breaking Down Barriers initiative (19:08) One of the hardest things that Lara deals with as a public figure. (36:02)
Some questions Bonni asks Lara:
How do you manage all that you do? (6:08)What led to your diagnosis? (23:20)What would you tell people who are in the beginning of their process and don’t have a firm diagnosis? (26:26)Why Lara rarely sees doctors these days (29:14)What drove you to do a marathon and how did you have the stamina to complete it? (31:43)Looking back at your journey would you change anything? (34:50)What is next for you and the Society? (41:50) What would your My Intent bracelet say? (44:35)What’s lighting you up right now? (47:11)What advice can you give other people on how to best advocate for themselves? (48:25)What does courage mean to you? (50:17)
Connect with Lara:
Website: https://www.larabloom.com/Instagram: https://www.instagram.com/lara.bloom/Twitter: https://twitter.com/larabloom?lang=en
Issues With My Tissues Documentary: https://www.youtube.com/watch?v=wd6EojcCMDAThe Ehlers Danlos Society Website: https://www.ehlers-danlos.com/Breaking Down Barriers Coalition: https://www.ehlers-danlos.com/breaking-down-barriers/#:~:text=Breaking%20Down%20Barriers%20Coalition&text=We%20do%20not%20accept%20inequality,affected%20by%20EDS%20and%20HSD.&text=The%20Coalition%20will%20address%20inequalities,Society%20programming%20and%20advocacy%20efforts
Connect with Bonni:
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