Episode Description
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Ever been told you’re “just bendy”? We sat down with Laura Bloom, president and CEO of The Ehlers-Danlos Society, to unpack what Ehlers-Danlos syndromes and hypermobility spectrum disorders really mean for everyday life and long-term health. In five focused minutes, we move past myths and into practical clarity: which EDS subtypes have known genetic variants, why hypermobile EDS still lacks a single marker, and how that uncertainty affects diagnosis, referrals, and care.
Laura breaks down the 2017 criteria—13 recognized types—and explains why all but the hypermobile type are rare to ultra-rare with identifiable genetic causes. The conversation then zooms in on the hypermobile end of the spectrum, where research and clinical experience point to heritability and complex mechanisms even without a validated test. You’ll hear how a connective tissue condition can reach far beyond joints, showing up as gastrointestinal challenges, ENT issues, bladder and gynecologic symptoms, autonomic features, and possible mast cell involvement. That breadth helps explain why so many patients bounce between specialties without a unifying plan.
The most compelling shift ahead is a diagnostic criteria update expected in December 2026, with early findings suggesting hEDS and HSD belong on a single spectrum. Unifying the framework could streamline evaluation, reduce confusion, and make it easier to access coordinated, multidisciplinary care. For patients and clinicians, that means better language, clearer expectations, and a stronger foundation for research and education.
If you’ve struggled to be believed or to connect the dots across systems, this fast, expert-led guide offers a grounded way forward. Subscribe for more five-minute expert answers, share this with someone who needs clarity, and send us your top question so we can bring the right voices to the mic.
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