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Examining The Future of EDS Diagnosis and Care with EDS Society CEO Lara Bloom
Manage episode 429496081 series 3499428
Innehåll tillhandahållet av Dr. Linda Bluestein and MD. Allt poddinnehåll inklusive avsnitt, grafik och podcastbeskrivningar laddas upp och tillhandahålls direkt av Dr. Linda Bluestein and MD eller deras podcastplattformspartner. Om du tror att någon använder ditt upphovsrättsskyddade verk utan din tillåtelse kan du följa processen som beskrivs här https://sv.player.fm/legal.
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/.
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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
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