Hi Friend

Picture a patient. She is thirty two. She has seen a rheumatologist, a cardiologist, a gastroenterologist, a neurologist and two psychiatrists. She has a folder full of normal blood tests and a growing sense that nobody believes her. Each specialist has named the part of her they can see. Nobody has named the thing sitting underneath all of it.

That thing is very often hypermobile Ehlers Danlos syndrome, or hEDS.

hEDS is not rare. Hypermobility related conditions are thought to affect roughly 1 in 500 people. And yet the average person with hEDS waits more than two decades for the right diagnosis and collects around two dozen other conditions along the way. That is not a rounding error. That is a system failing to look.

Three things conspire.

First, hEDS is a whole body problem wearing the disguise of single ones. The loose, unstable connective tissue that defines it affects joints, blood vessels, gut, skin and the nervous system all at once. So the patient does not arrive with one clean complaint. She arrives with ten. And our health system is built to send ten complaints to ten different clinics, none of whom are asked to join the dots.

Second, it mostly affects women, and women with unexplained symptoms are still far too often told the problem is emotional. In a 2025 review of 429 people with hEDS, published in the journal Children, an astonishing 94.4% had at some point been told by a doctor who was not a psychiatrist that their symptoms were in their head, that they were making it up, or that they were attention seeking. Only around one in twenty reached a correct diagnosis without being psychologised first. Read that number again.

Third, there is no blood test and no single gene to point to. hEDS remains a clinical diagnosis of exclusion. Plenty of clinicians are uncomfortable making a diagnosis they cannot confirm on a machine, so they quietly do not make it at all.

This is the part that matters most, because hEDS rarely goes undiagnosed in silence. It goes undiagnosed under other names.

Fibromyalgia. hEDS produces chronic widespread pain from joints that partially slip, strain and inflame thousands of times a day. If nobody actually checks how the joints move, that pain looks exactly like fibromyalgia, and the label sticks for life.

ME, also called chronic fatigue syndrome. People with hEDS are profoundly tired, and for good reason. Their bodies burn enormous energy simply holding unstable joints together, their sleep is wrecked by pain, and many have a nervous system that never fully settles. The exhaustion, and the heavy crash that follows even light activity, map neatly onto an ME picture.

POTS and dysautonomia. This one is less a wrong answer than half an answer. hEDS and POTS travel together so often that finding one should always trigger a hunt for the other. Yet POTS is regularly diagnosed and managed on its own, with the connective tissue cause underneath it left completely unexamined.

Add mast cell activation, anxiety, irritable bowel and migraine, and you get a person carrying five or six labels that are all really branches of one trunk.

The criteria we use today were set in 2017. They were a real step forward at the time, but in practice they are narrow. The first hurdle leans heavily on the Beighton score, a quick bendiness test that misses people whose joints have stiffened with age, whose hypermobility sits in areas the score never checks, or who were far bendier as children than they are today. Fail that first gate and the whole door closes.

The result is that most hypermobile patients who get assessed do not clear the bar for hEDS. They are instead given a diagnosis of hypermobility spectrum disorder. In one large clinic sample, fewer than 1 in 5 met the hEDS threshold while more than 60% were placed in the spectrum group. The problem is that many patients, and frankly many clinicians, treat that spectrum label as less real and less deserving of care, even when the symptom burden is exactly the same.

Here is the good news, and it is real.

The Ehlers Danlos Society is running a major revision known as the Road to 2026. A new framework is due to be published on the first of December 2026, the first significant update since 2017, and a revised model is already being trialled in clinics. The early direction is genuinely hopeful. The research increasingly treats hEDS and the wider hypermobility spectrum as one shared biological continuum rather than two tiers, which should end a great deal of the arbitrary gatekeeping. Work is also underway on the first possible objective marker, a pattern found in patient blood, which could one day move hEDS away from being a diagnosis of exclusion at all. Alongside the criteria, the project aims to hand ordinary clinicians a clear diagnostic pathway, so that spotting this no longer depends on happening to find the one doctor in the region who already knows.

None of this is finished. The new criteria are not here yet, and no criteria on their own will fix a medical culture that reaches for "in your head" long before it reaches for "hypermobile". But broader, clearer rules with a genuine route in for generalists is exactly what a chronically missed condition needs.

If you have spent years being handed a fresh label every time a new symptom appears, you are not a difficult patient and you are not imagining it. You may simply have been assessed one system at a time for a condition that lives in all of them at once.

Also just a quick note, my 5 in 1 formulated magnesium for sensitive bodies, with 5 of the purest forms, no bulkers or fillers will be launching in the next 2 weeks. Join here to be told first on launch. I want this to be a brand built for you, what would you like the next product to be:

Stay Well

Dr Ahmed

This newsletter is for general information and education only. It reflects my views and is not a substitute for personalised medical advice. Reading it does not create a doctor and patient relationship. Always speak to your own GP or a suitably qualified clinician before making decisions about your health, medication or treatment, and seek urgent care for anything serious or worsening.