Zebra Spotting
The Hypermobile “Tell” You Can See From Across the Room (And Other Patterns We All Quietly Clock)
Big News in Zebra Land: New Diagnostic Criteria Coming in 2026
Before we get into the art of spotting a hypermobile human from across a grocery store aisle, there’s some fresh news in the connective tissue world.
This week, the Ehlers-Danlos Society announced that updated diagnostic criteria for hypermobility disorders are expected to be revealed on December 1, 2026. The revision process has been underway for several years through international working groups studying hypermobility disorders and the evolving classification of these conditions.
The current diagnostic framework dates back to the 2017 International Classification of the Ehlers-Danlos Syndromes, which introduced the modern criteria for Hypermobile Ehlers-Danlos syndrome (hEDS) and the umbrella term Hypermobility Spectrum Disorders (HSD) for people with symptomatic hypermobility who don’t meet full hEDS criteria.
For years, patients and clinicians alike have pointed out the gray areas in that system. Many patients sit in the diagnostic no-man’s-land between the two labels, while others feel the criteria are overly strict or inconsistently applied. It’s been a hot topic and taken more than a minute to revise.
But now, the scientific committees are revisiting the classification.
What will change?
Well… that’s the million-dollar question.
The researchers involved are working under confidentiality agreements while the revisions are finalized. So at the moment, the rest of us—patients, advocates, clinicians, and what I affectionately call the vintage zebras—are waiting to see what emerges.
My personal suspicion (and it’s only that: suspicion) is that the revision may move toward recognizing hEDS and HSD along a single spectrum of connective tissue disorders based on joint hypermobility, rather than maintaining a rigid divide between them.
But honestly? None of us outsiders know yet. Except the scientists and others who had to sign the NDAs.
And I’ll admit something: that level of information control by a nonprofit always makes me a little itchy. My advocacy style has always leaned toward open information sharing so patients can learn, compare experiences, and recognize patterns sooner rather than later.
Still, here’s to hoping the new criteria make diagnosis easier and more accurate for the next generation of zebras.
Because many of us who’ve been living this life for a while—the vintage zebras—already know something interesting:
We can spot each other from across the room.
And that’s where this article begins. How to spot a zebra. Because when you know, you know. You can see their hypermobility.
Let’s start with the tells you can see…
The Banana Knees
You know the stance.
Someone is “standing straight,” except their knees are bending backward like parentheses. Like they’re politely trying to exit the femur.
The medical term? Genu recurvatum (knee hyperextension). And yes, knee hyperextension is part of the Beighton score, the most widely used screening tool for generalized joint hypermobility (≥10° past neutral gets a point per knee).
You don’t have to diagnose it. You just see it.
Your brain goes: Ah. Hey there my Collagen cousin.
Need dets?
Clinical overview of hypermobile EDS:
https://www.ncbi.nlm.nih.gov/books/NBK1279/Beighton score overview:
https://www.ehlers-danlos.com/assessing-joint-hypermobility/
The Hands That Didn’t Get the Memo About “Normal Range”
Across the room you spot:
Fingers that bend back just a little too far
Thumbs that casually threaten to touch forearms
The “double-jointed” party trick that was once adorable and is now… expensive
Hypermobility communities joke about “Bluetooth ligaments” and “airplane mode joints.” But clinically? Excessive range at small joints is absolutely part of generalized hypermobility screening. Not everyone has long, slender “piano fingers.” Not everyone looks marfanoid. But the slight overextension at rest? That one’s a zebra whisper.
The Clumsy-But-Athletic Paradox
This one is everywhere online.
“I was amazing at dance.”
“I was the flexible gymnast.”
“I could do splits without warming up.”
“I also trip over flat ground and sprain my ankle walking to the mailbox.”
How are both things true?
Because hypermobility can create:
Greater available range of motion (athletic advantage early on)
Joint instability and proprioceptive challenges
Research suggests many hypermobile individuals have differences in proprioception and balance, which may contribute to instability and injuries.
Example research review:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10312239/
Translation:
Your body had premium range but the stabilizing software needed updates.
The “I Was Fine Until…” Origin Story
Many hypermobile humans describe a turning point:
A virus
A car accident
Surgery
Pregnancy or postpartum
Puberty
A major stressor
Or the year they stopped exercising
Hypermobility itself is constitutional—it’s part of how your connective tissue is built. But symptoms often become noticeable after physiological stressors or when muscular stability declines.
Puberty is even identified in major reviews as a common time when symptoms can escalate.
National Academies review:
https://www.ncbi.nlm.nih.gov/books/NBK584966/
Which leads to one of the least glamorous but most powerful zebra truths:
A hypermobile musculoskeletal system does better with regular movement.
Not extreme stretching.
Not “deep yoga heroics.”
Not competitive flexibility.
But controlled strength and stability. Just ask Jeannie Di Bon. She’s an expert teaching hypermobile humans how to move their meat suit safely using her platform and the Zebra Club app.
The Body Type Myth (Let’s Retire It)
You’ve probably heard the stereotype:
Tall. Thin. Lanky. White. Female.
Reality? Diagnosis skews female in datasets, but that reflects referral patterns and recognition bias as much as biology.
One UK population study found diagnosed EDS/HSD populations were about 70% female, highlighting both true sex differences and diagnostic trends.
BMJ Open study:
https://bmjopen.bmj.com/content/9/11/e031365
Men have hypermobility too.
People of color have hypermobility.
People in larger bodies have hypermobility. Some of used to be thin.
Bottom line: The zebra’s stripes come in a lot of different patterns.
The Heel Bubbles Nobody Warned You About
A secret it takes time to notice. Let’s talk about piezogenic papules.
Those tiny fat herniations that appear at the heel when you stand.
They’re harmless in many people—but they show up frequently enough in hypermobility discussions that discovering the name feels like finding the secret chapter of the zebra manual.
Clinical overview:
https://www.ncbi.nlm.nih.gov/books/NBK1279/
The Years of “Weird Unrelated Symptoms”
If you weren’t diagnosed early, chances are you went through the Medical Scavenger Hunt also known as the “diagnostic odyssey”:
GI issues.
Pelvic pain.
Migraines.
Dizziness.
Fatigue.
Anxiety labels.
Normal lab work.
Hypermobility disorders are multi-system conditions, and diagnostic delays are common. Like 12-15+ years until an ultimate correct diagnosis. Which is why so many of us eventually learn to recognize the patterns ourselves. And why patient and community are so important.
The Social Media Pattern We All See
Spend five minutes on hypermobility Insta or TikTok and you’ll hear:
“Anyone else sit like a pretzel?”
“Did you think everyone could do this with their thumb?”
“Why do my knees look like this?”
“I stopped exercising and everything fell apart.”
“Puberty is when my body turned on me.”
It’s not mass hysteria. It’s pattern recognition. Zebras recognize stripes because we live in a herd.
A Gentle Warning About Zebra Spotting
Yes, we can see the tells. No, we are not allowed to diagnose strangers at Costco.
Use pattern recognition for:
Self-understanding
Better questions for providers
Finding community
Recognizing that your story is not unique, but still deserves proper care
And definitely NOT for playing connective tissue bingo with other people’s bodies in public.
The Real Takeaway
If you are hypermobile and able to move:
Stay moving—wisely.
Build strength like scaffolding.
Respect your end range.
Your collagen may be chaotic.
But your strategy doesn’t have to be.
Your Turn
What’s the across-the-room tell you notice?
Was there a moment in your life when things suddenly shifted?
The vintage zebras in this community have seen a lot of stripes.
Let’s compare notes. 🦓
I literally learn more and more every time you write. I cannot thank you enough for all your effort, knowledge, wit and wisdom written into what you share. With two adult daughters already diagnosed, I’m seeking to make my dx official on paper this year. Been verbally dx twice by same geneticist who dx my girls, but don’t want to wait another 3-4 yrs on his waitlist so, moving ahead on my own. We’ve made progress this year based on tools you’ve given us. Keep doing what you do! You do make a difference
Popping in to say: not all hypermobile bodies are gumby, some of us are tinmen. No one would have spotted me from across the room. I was nearly frozen before I was twelve (I almost died of Salmonella Typhi at 8 months old) and I WAS frozen by 30 and couldn't even raise my arms above my head.
I dismissed being hypermobile for decades and ended up severely injured because of that dismissal. The only reason I figured it out is the diagnosis of MCAS and POTS led me to read Transforming Ehlers-Danlos Syndrome and I saw myself in those pages so clearly I laugh-cried at the absurdity I'd missed it.
Yoga fully revealed my underlying instability, but not until after a major spine injury, so I try very hard to raise awareness that some of us zebras don't look very bendy.