Examining The Future of EDS Diagnosis and Care with EDS Society CEO Lara Bloom (Ep 102)

In this episode, Dr. Linda Bluestein, the Hypermobility MD, hosts a captivating conversation with Lara Bloom, President and CEO of the Ehlers-Danlos Society. Lara shares her journey in advocating for rare diseases, the progress made in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and the upcoming updates in diagnostic criteria. Tune in to learn about the challenges, successes, and future directions in EDS research and patient care. Takeaways: Global Progress: The Ehlers-Danlos Society has significantly advanced global awareness and research on EDS and HSD. Diagnosis Challenges: Misdiagnosis and lack of understanding among doctors persist; re-education efforts are ongoing. Bloom's Journey: Lara Bloom's path from volunteer to CEO highlights the impact of lived experience in advocacy. Diagnostic Criteria Update: The 2017 criteria for hypermobile EDS will be revisited by 2026, involving extensive research and collaboration. Movement and Self-Care: Regular physical activity is crucial for managing EDS and HSD symptoms, as emphasized by both Bloom and Bluestein. Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.   This episode is sponsored by EDS Guardians. If you want to learn more, check them out here: https://www.edsguardians.org/    Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.🎧 Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/.        Learn more about Human Content at http://www.human-content.com Podcast Advertising/Business Inquiries: sales@human-content.com YOUR bendy body is our highest priority! 🧬🔬🦓 Learn about Lara Bloom: Website: https://www.larabloom.com/ Twitter: @larabloom Instagram: @lara.bloom Youtube: @LaraBloom Keep up to date with the HypermobilityMD: YouTube: youtube.com/@bendybodiespodcast Twitter: twitter.com/BluesteinLinda LinkedIn: linkedin.com/in/hypermobilitymd Facebook: facebook.com/BendyBodiesPodcast Blog: hypermobilitymd.com/blog Part of the Human Content Podcast Network

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Whether you’re bendy with all the benefits or hurting in all the wrong places, you’ve come to the right place for all things hypermobility. Connective tissue disorders like Ehlers-Danlos Syndromes (EDS) are often dismissed or overlooked by healthcare providers as a cause of chronic pain. But if you or someone you care about struggles with the life-altering symptoms of hypermobility, you should know YOU ARE NOT ALONE! At the Bendy Bodies Podcast, we understand. Each week, join Dr. Linda Bluestein (The Hypermobility MD) as she pulls back the curtain on how to prevent injury and unnecessary suffering in “double-jointed” individuals seeking a more comfortable life in their unique, complex “bendy bodies.” When you tune in, you’re engaging in more than a podcast. Both on-air and online, you’re joining a supportive community where patients, caregivers, and healthcare professionals trade insights, life hacks, and inspiring stories to embrace our Bendy Bodies journey together!