05/25/2026
A doctor with 14.8 million subscribers just told his audience to think about us. Here's what I want you to know if you found me through that link.
Dr Mike posted a video about the phrase doctors learn in medical school:
"When you hear hoofbeats, think horses, not zebras."
It means: assume the common explanation before the rare one.
He identified three conditions that are often overlooked because of it.
PCOS. Thyroid disease. And ours — Ehlers-Danlos syndrome.
If you're new here because of that video, welcome.
And if you're still trying to figure out what's happening in your body, here's what I wish someone had told me before I spent years being dismissed.
The "rarity" framing is part of the problem.
Dr Mike cited 1 in 5,000 for EDS overall. That figure comes from older literature that often missed hypermobile EDS, the most common subtype.
A 2019 BMJ Open study using Welsh primary care records put the diagnosed prevalence of hEDS and HSD combined at closer to 1 in 500. That's not a contradiction, it's a recognition that most of us in this community have hEDS or HSD, and we weren't being counted properly before.
Subtypes like vascular, classical, and kyphoscoliotic are genuinely rare—but we are even smaller on paper than we are in reality. We are a rare community, but more importantly, we are a dangerously underdiagnosed one.
The wait is long. Longer than most people realise.
Studies and patient surveys consistently document average diagnostic delays of a decade or more, with many patients consulting multiple specialists before receiving a diagnosis. (Ti**le et al., 2017, American Journal of Medical Genetics Part C)
Most of us aren't dismissed once. We're dismissed repeatedly, by different people, across different systems, over the years.
"Easy bruising" is one of dozens of presentations.
Dr Mike's example was a man with easy bruising whose blood tests came back normal.
That's one path.
Others look like:
the kid who was "always tired" the teenager with mysterious joint pain dismissed as growing pains the adult with a heart that races for no reason the patient with allergic-type reactions to things that shouldn't cause them the chronic pain that no specialist can locate the source of the gut that doesn't work right the dizziness in busy, upright environments crowded aisles, long queues that gets labelled anxiety the slow healer who bruises for weeks from a small bump the kid who couldn't sit still because their skin felt hypersensitive to the touch a response that research has linked to small fibre neuropathy, documented in EDS patients (Cazzato et al., 2016, Neurology)
The reason it takes so long isn't that we have one weird symptom.
It's that we have ten ordinary-seeming symptoms that nobody connects.
Diagnosis depends on the subtype.
For most of the rarer subtypes — vascular, classical, kyphoscoliotic, dermatosparaxis, and others there are genetic tests that can confirm or rule them out. The problem with those subtypes isn't testing. It's that doctors don't think to order the test in the first place because the presentations are unusual enough to be missed.
For hypermobile EDS, the most common subtype, there is no genetic test at all. Diagnosis is clinical, based on a set of physical examination findings and symptom history, evaluated against criteria developed by an international team of specialists in 2017.
Either way, the diagnosis depends on finding a doctor who knows what to look for.
For most of us, that's the whole problem.
One more thing worth knowing:
EDS often doesn't travel alone. I've written a deeper breakdown of the conditions that commonly overlap with it, pinned to my page. Worth a read once you've sat with this one.
What to do if you suspect this is you:
Look up the Beighton score; it's a standardised assessment of joint hypermobility used as part of the hEDS diagnostic process.
Look up the 2017 hEDS diagnostic criteria.
Take both to a doctor, ideally a rheumatologist or geneticist. A physiotherapist with hypermobility experience can be a valuable part of your care team and may help identify the pattern, but a formal diagnosis requires a physician.
One important note on the Beighton score: a low score does not rule out hEDS. It's one component of a larger set of criteria. Bring it as a conversation starter, not as a verdict.
If you suspect a rarer subtype based on family history of vascular complications, distinctive skin findings, or other features, a clinical geneticist is the right starting point.
If the first doctor dismisses you, try the next one.
We're used to that part.
One thing Dr Mike got exactly right:
He told patients to advocate for themselves.
That's the difference between a 2-year diagnosis and a 20-year one.
Nobody is going to fight for your body harder than you will.
If you found this page through his video, stay a while. We've been talking about this for years before it reached his platform. There's a whole community here that knows what you're going through, across every subtype.
If this kind of content helps you understand your body, follow the page and support the work so I can keep doing deep research like this.
If you live with this, what was the moment a doctor finally took you seriously? 👇
Disclaimer: I'm an educational content creator (), not a doctor or medical professional. This post discusses research and patient experience for community awareness only and is not medical advice. If you suspect a connective tissue condition, please consult a qualified healthcare provider familiar with hypermobility disorders.
Sources:
1. Demmler JC, et al. (2019). Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK. BMJ Open 9(11).
2. Malfait F, et al. (2017). The 2017 international classification of the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C.
3. Ti**le B, et al. (2017). Hypermobile Ehlers-Danlos syndrome: Diagnostic and management considerations. American Journal of Medical Genetics Part C.
4. Cazzato D, et al. (2016). Small fibre neuropathy is a common feature of Ehlers-Danlos syndromes. Neurology 87(2):155–159.
