QC: Understanding EDS And Hypermobility and The Biggest Misconceptions

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.

Chapters

• 0:00 Quick Connect Format & Disclaimer
• 0:41 Introducing Laura Bloom And Her Work
• 1:29 What EDS And HSD Are
• 2:22 Diagnostic Criteria And 2026 Update
• 2:59 Why Hypermobility Is Misunderstood
• 3:20 Beyond “Bendy”: Systems And Comorbidities
• 4:26 Closing And How To Send Questions

Transcript

Quick Connect Format & Disclaimer

SPEAKER_00 0:00

Life moves fast, and so should the answers to your biggest questions. Welcome to Indo Batteries Quick Connect, your direct line to expert insights. Short, powerful, and right to the point. You send in the questions, I bring in the experts, and in just five minutes, you get the knowledge you need. No long episodes, no extra time needed. And just remember, expert opinions shared here are for general information and not for personalized medical advice. Always consult your provider for your case-specific guidance. Got a question? Send it in, and let's quickly get you the answers. I'm your host, Alana, and it's time to connect. Today I am honored to welcome Laura Bloom to the table. Laura is the president and CEO of the Ellers Downlow Society, where she leads global efforts in research, collaboration, education, and care advancement for people living with Ellers Downlow Syndrome, hypermobility spectrum disorders, and related conditions. What makes Laura's work so powerful is that it sits in the intersection of medicine, policy, and lived experience. She's spent over a decade pushing for patient engagement and global collaboration, work that's taken her from grassroots advocacy to advisory roles with organizations like the World Health Organization, Rare Diseases International, and academic institutions, including Penn State College of Medicine. Please help me in welcoming Laura Bloom to the table. Can you give us just a quick overview of EDS and what it is and how the different subtypes vary?

Diagnostic Criteria And 2026 Update

SPEAKER_01 1:37

Absolutely. So there's the Alice Downlos syndromes and there's hypermobility spectrum disorders. And EDS, there's 13, 14 types depending on what paper you read. But the 27 type uh 2017 criteria is 13 types of EDS. All of them but the hypermobility type are rare and ultra-rare, and we know the pathogenics of the disease-causing variant in those. You can have a genetic test to get diagnosed with them. But the hypermobile type, although there's been a lot of advancement in that area, we still don't yet know the marker behind it, and we also believe it's not rare. So that one is quite prevalent, as with the same with HSD. And there's also been a huge body of work going into at the moment actually seeing if heads and HSD are one in the same condition. And it's thought from early outcomes of that research that they are, and they sit on a spectrum that they are one condition, and that will all be published, and uh we will have an updated diagnostic criteria for all of EDS and HSD in December of 2026 this year. Um got to get used to saying this year. Um, so that's really exciting because we've waited since 2017 for that, and prior to that we waited two decades. So um we're really ramping up how often these get done and uh giving, I think, the community what they need, which is answers and more clarity, because the 2017 criteria is far from perfect.

Why Hypermobility Is Misunderstood

SPEAKER_00 2:58

Yeah. Why what do you think is the biggest misunderstanding about hypermobility and why it's minimized?

Beyond “Bendy”: Systems And Comorbidities

Closing And How To Send Questions

SPEAKER_01 3:05

I think historically hypermobility has been seen to be something quite benign. And it's really difficult to educate people, but it's even harder to re-educate people as to what it actually means. And what do we mean, you know, by EDS and HSD? Well, largely it's that it's a connective tissue condition, which we believe is well, we know for the rarer types is is genetic, and we believe there is an element of it that could be genetic with hypermobile EDS and HSD as well, but we have yet to prove that. And it impacts everything from your head to your toe and all the systems in between. And you see a lot of comorbidities, some consistently seen, others not so consistently seen. And it's hard to always know what are related to EDS and HSD and what are just occurring in the population, but there is this sense that it just means you're a bit bendy. And we know now, and there's a ton of published evidence out there that tells us it's much, much more than that. It's you know, GI issues, it's ENT issues, it's mast cell issues, it's bladder issues, it's you know, gynee issues, it's it's really so many different things. And within each of those is a spectrum and it affects people differently. And then of course, that's that's largely hypermobile EDS and chest D. And then with the rarer types, there's obviously a lot more severe complications that you can see as well.

SPEAKER_00 4:26

That's a wrap for this quick connect. I hope today's insights helped you move forward with more clarity and confidence. Do you have more questions? Keep them coming. Send them in, and I'll bring you the expert answers. You can send them in by using the link in the top of the description of this podcast episode or by emailing contact at Indobattery.com or visiting the Indobattery.com contact page. Until next time, keep feeling empowered through knowledge.