Ehlers-Danlos Syndrome: Rare or Just Misunderstood?

Ehlers-Danlos Syndrome (EDS) is like that guest at a party you’ve heard of but can’t quite figure out if they’re famous or just mysterious. Officially labeled a “rare condition,” it’s often more like a medical cryptid—whispered about, occasionally sighted, but frustratingly misunderstood.

Yet, if you ask those living with EDS, they’d tell you it’s less “rare” and more “rarely understood.” So let’s cut through the noise and shine a spotlight on what’s really going on. Spoiler: It’s more common than you think—sort of like finding glitter in your house six months after a craft project.

What Even Is EDS?

For the uninitiated, EDS is a group of genetic connective tissue disorders. Picture your body as a trampoline—now imagine the springs are stretchy, worn out, and don’t quite snap back into place. The whole structure gets a little… unpredictable. That’s EDS.

It comes with a medley of symptoms, including chronic pain, fatigue, stretchy skin, and the ability to bend in ways that make yoga instructors jealous—until they hear the ominous popping sound your joints make. In other words, it’s a full-body surprise party where the theme is “Guess What Dislocates Today?”

For more information, visit: The Ehlers-Danlos Society

The Numbers Game: Is EDS Actually Rare?

Here’s where things get tricky. For years, EDS has been slapped with the “rare disease” label, but that depends on how you define “rare.”

• Official estimates suggest that EDS affects around 1 in 5,000 people worldwide. But here’s the kicker: EDS isn’t just one thing—it’s an umbrella term covering 13 different subtypes. Some of those, like vascular EDS (vEDS), are genuinely rare (as in, “winning-the-lottery-but-in-a-bad-way” rare). Others, however, might be lurking in the population like an unacknowledged plot twist.

• Hypermobile EDS (hEDS) is the least rare of the bunch and may affect as many as 1 in 500 people. But because there’s no definitive genetic test for hEDS, diagnosis relies on clinical criteria. So, if your doctor isn’t well-versed in spotting it, you might get a vague “mystery illness” label instead.

• UK Data: A 2019 study in Wales found that EDS and related hypermobility disorders affect about 1 in 500 people. That translates to hundreds of thousands of people in the UK living with EDS—diagnosed or not. The study also found that women are diagnosed an average of 8.5 years later than men, because apparently, the patriarchy even extends to connective tissue.

Read the study here: Prevalence of EDS and Hypermobility Spectrum Disorders

Busting Myths: The Rarity Problem

Let’s dismantle some of the greatest hits in EDS misinformation:

“It’s Rare, So Doctors Know What It Is”

Oh, sweet summer child. Many people with EDS spend years being misdiagnosed with fibromyalgia, arthritis, MS, or, my personal favorite, anxiety. Imagine taking your car to a mechanic for a broken wheel, only to be told that, actually, you just have anxiety about driving.

“It’s So Rare, You’re Unique!”

Thanks, Karen, but uniqueness loses its charm when it means spending years explaining your own body to doctors, employers, and nosy acquaintances who ask why you carry joint tape like it’s a fashion statement.

“If It’s Common, Why Haven’t I Heard of It?”

Because awareness for EDS is like avocado toast—trendy in some circles, completely absent in others. Hypermobile EDS, in particular, often hides in plain sight, dismissed as just “being double-jointed” or “clumsy.” (Spoiler: If you fall down the stairs twice in one day, it’s not just ‘clumsiness.’)

For further reading on common misconceptions: EDS Myths & Facts

Why This Actually Matters

If EDS isn’t as rare as we once thought, why does that matter? Because calling it rare gives everyone an excuse to ignore it. It leads to delayed diagnoses, underfunded research, and an entire community of people feeling like they’ve wandered into a medical escape room with no clues and a doctor who keeps insisting they’re fine.

Increased awareness and education could mean earlier diagnoses, better treatment options, and fewer people being told to “just exercise more” (a stellar bit of advice when your body is held together with metaphorical duct tape and stubbornness).

For advocacy and resources: EDS Support UK

The Truth About EDS

The truth is, EDS is probably hiding in plain sight, especially in its hypermobile form. While the rarer subtypes like vascular EDS absolutely deserve the attention their severity demands, the larger EDS community needs recognition too. The more we talk about it, the closer we get to better care, faster diagnoses, and fewer patients being gaslit into believing their symptoms are imaginary.

Find a specialist: EDS & Hypermobility Clinics

Wrapping It Up

Ehlers-Danlos Syndrome may have started its reputation as a medical zebra, but the more we understand it, the more it looks like an entire herd of striped friends demanding a spotlight. So the next time someone insists EDS is “rare,” feel free to channel your inner dark side and say:

“Actually, it’s less rare and more rarely diagnosed, and that’s on you, Jeff.”

Because when it comes to EDS, the more we know, the better we all bounce. Or, at the very least, the less likely we are to snap a trampoline spring in the process.