How often have you heard, “You’re one in a million?” For many floppies, that phrase is familiar. Sometimes it comes from well-meaning healthcare providers who see your case as rare or unusual, but here’s the twist: hypermobility is not nearly as rare as once thought.

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So how common is it, really?

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Research is, well, a little all over the place. Depending on the study, anywhere from 0.5% to 12.5% of the population may be hypermobile, with most estimates landing around 3%. That is not one in a million. That is three out of every hundred people. Which means you probably know more floppies than you realize.

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If we zoom in closer to home, that number is even more eye-opening. Right here in OKC, population estimates suggest there are about 31,000 floppies in the metro. That is 31,000 people who deserve specialized care. Thirty-one thousand people who need healthcare providers to think differently, to step outside the box, and to consider how floppy connective tissue impacts the whole system, not just one joint or symptom at a time.

 

Part of the challenge is that we don’t yet have a perfect diagnostic test. Yes, the Beighton score exists. Yes, we have criteria for diagnosing hypermobile EDS (hEDS), but there’s still subjectivity baked in. Did that pinky really bend past 90 degrees? Does an elbow count if it hyperextends only 8 degrees instead of 10? Tiny differences can change the outcome, and that makes things messy.

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So where does that discrepancy in prevalence come from? Is it the lack of clear criteria and diagnostic tools or is it that we have simply not been looking? Hypermobility is not something most medical providers learned about in school, and if it was, it was most certainly not taught in depth. If you are not trained to recognize something, you are far less likely to identify it in your patients.

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The good news is that change is on the horizon. The Road to 2026, led by The Ehlers-Danlos Society, is actively working to update diagnostic criteria and open doors for new treatment pathways. Change can feel daunting, but real progress is happening, and that is worth celebrating.

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We do not yet know exactly what the new criteria will include, but at BAR we are optimistic. Our hope is that it will be more inclusive of the many ways floppy bodies show up in the world and more accessible to healthcare providers everywhere. With clearer guidelines, more clinicians will be able to recognize hypermobility, connect patients to the right resources, and start providing the care that has been missing for far too long.

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As research digs deeper into the root causes of hypermobility, especially at the cellular level, new insights are surfacing. That means more questions, yes, but also more answers, better care, and more hope.

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Here at BAR Therapies, we believe floppies are not rare curiosities. You are individuals with unique needs who deserve recognition, respect, and excellent care. The future holds brighter days, and together as a community, we are moving toward them. To help accelerate that change, we launched the BAR Institute, a space designed to support our healthcare colleagues in learning more about hypermobility. If you know someone who may be interested, please share the link with them.

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You may feel like “one in a million,” but you are never alone. You are part of a growing, resilient, and powerful floppy community. Let's continue to build together.