Examining The Future of EDS Diagnosis and Care with EDS Society CEO Lara Bloom

Bendy Bodies with Dr. Linda Bluestein

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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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