S3E5: Lara Bloom on hEDS and HSD

Move Daily Health Podcast

We had the pleasure of speaking with Lara Bloom, President and CEO of The Ehlers-Danlos Society. Lara raises global awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Tune in to hear Lara's insights on the people, projects, and global effort behind increased awareness and advocacy for those living with hEDS, HSD, and related disorders. If you don't want to miss an episode, subscribe to The Move Daily Health Podcast on Stitcher, iTunes, or YouTube https://youtu.be/1SP2garPglg Show Notes 0:00 Introduction 1:30 Lara speaks to the 14 years she has spent working in this field and how the awareness and understanding about hEDS and HSD has evolved 6:59 How The Ehlers-Danlos Society created opportunity and accessibility during the pandemic 11:15 The role of the "patient" expert, client-centred care, verbiage and validation 16:00 How diagnosis and management for hEDS and HSD in the US, UK, and elsewhere varies 21:00 Personal experience can be a spark for change while not being the driver longterm 22:41 How The Ehlers-Danlos Society team is driven and motivated to keep going 25:00 The benefits and innovation that comes from being online and in-person when raising awareness 28:30 Pediatric guidelines on hypermobility spectrum disorders 31:00 Exciting new and upcoming projects with The Ehlers-Danlos Society 35:42 How to get involved in research if you have hEDS or HSD Recommended Reading & Listening https://www.ehlers-danlos.com/eds-global-registry/ Lara Bloom's Wesbite The Ehlers-Danlos Society Website The EDS ECHO program https://www.movewelldaily.com/ehlers-danlos-syndrome-eds/ https://www.movewelldaily.com/after-diagnosis-heds-and-hsd/ https://www.movewelldaily.com/managing-heds-hsd-flares/ Connect with Move Daily https://www.movewelldaily.com/movement-and-nutrition-coaching/ https://www.movewelldaily.com/contact-us/ If you enjoyed our conversation and would like to hear more: Please subscribe to The Move Daily Health Podcast on Stitcher, iTunes, or YouTube We would also appreciate a review! Thank you and stay tuned for the next episode! .wpedon-container .wpedon-select, .wpedon-container .wpedon-input { width: 144px; min-width: 144px; max-width: 144px; }