A zebra standing in its natural habitat, representing the medical community's symbol for Ehlers-Danlos Syndrome and rare connective tissue disorders.

Ehlers-Danlos Syndrome: What Your Body Is Actually Trying to Tell You

June 10, 2026•10 min read

A deep dive into the condition that takes an average of over 20 years to diagnose — and what the latest research is finally revealing.

If you've ever been told your pain is 'just anxiety', that you're 'too young to have these symptoms', or that you simply need to 'exercise more and stress less' — and yet you're still here, still hurting, still not getting answers — this one's for you.

Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders that affect collagen — the structural protein that holds everything together. Skin, joints, blood vessels, organs. All of it. When collagen doesn't form or function properly, the downstream effects can be dizzying in their variety: hypermobile joints, chronic pain, fatigue, gut problems, heart rate irregularities, and a whole lot more.

It's also, historically, one of the most under-diagnosed conditions in existence. But that's starting to change — and the science behind it is moving fast.

The Basics: What Is EDS?

EDS isn't one condition — it's an umbrella term for 13 recognised subtypes, each with a distinct genetic cause and presentation. The most common by a significant margin is hypermobile EDS (hEDS), which accounts for roughly 90% of all EDS cases. It's also the one that, until very recently, had no confirmed genetic marker and no blood test — meaning diagnosis has always been based purely on clinical assessment.

The other subtypes — including classical EDS, vascular EDS (vEDS), kyphoscoliotic EDS, and others — all have identified gene mutations and can be confirmed with genetic testing. Vascular EDS, in particular, is the most serious: it affects major blood vessels and internal organs, and carries significant life risk. It's rare, but it matters to know about.

The 2017 International Classification was a landmark moment — it overhauled how EDS was categorised and diagnosed. But nine years on, the science has moved considerably, and a major update is now underway.

The Ehlers-Danlos Society's 'Road to 2026' initiative is working to publish a completely revised classification framework in December 2026 — the first update since 2017. It aims to reduce diagnostic delays, improve clinical pathways, and finally account for what we now know about the biology of hEDS.

The Diagnostic Disaster: 22 Years. On Average.

Here's one of the most important - and frankly, most damning - statistics in EDS research right now.

A large-scale global survey of nearly 4,000 people with hEDS found that while symptoms typically begin in early childhood (average age of onset: 9.3 years), formal diagnosis doesn't usually happen until around the age of 31. That's an average diagnostic delay of over 22 years.

Let that sit for a moment. Twenty-two years of symptoms. Of being told it's in your head. Of chasing answers through GP appointments, rheumatology referrals, physiotherapy, and private consultations, often still coming up empty.

A 2024 study of 152 women with EDS in Australia found that more than half had been experiencing symptoms for over 15 years before diagnosis, and more than three-quarters had received at least one other diagnosis first - things like fibromyalgia, anxiety, chronic fatigue syndrome, or functional neurological disorder.

And a 2025 retrospective review of 429 patients found that 94.4% had been told by non-psychiatric physicians that their symptoms were psychological in origin. Not by psychiatrists making a clinical judgement - by doctors who simply didn't know what they were looking at, and defaulted to 'it must be in your head.'

This is not a niche problem. This is a systemic one. And it disproportionately affects women, which will surprise nobody.

The Science Catches Up: What We're Learning About hEDS

A scientist in a laboratory pipetting liquid into test tubes, representing research into biological markers for Ehlers-Danlos Syndrome. — For decades, diagnosing hypermobile EDS meant ticking boxes on a clinical checklist — because there was nothing to test for. That's changing. Researchers have now identified a specific protein fragment in the blood of hEDS patients that isn't present in healthy controls. It's not a usable test yet, but it's the closest we've ever been to one. The science is catching up.

The Biomarker Breakthrough

For years, the biggest barrier to diagnosing hEDS was the absence of a biological marker. No blood test, no genetic test, no objective measure - just clinical criteria applied by a clinician who had to know what they were looking for. Most didn't.

That's starting to change. Research published in 2025 identified a unique 52 kDa fragment of fibronectin in the blood of people with hEDS and hypermobility spectrum disorders (HSD) - a fragment that was absent in healthy controls and in other EDS subtypes. This is potentially a first-of-its-kind candidate for a blood-based diagnostic marker for hEDS.

Separately, a 2025 proteomics study found 35 blood proteins that were significantly different in people with hEDS compared to matched controls. Among the most notable findings: reduced complement proteins (C1QA, C3, C8a, C8b, C9) - pointing to possible immune system dysregulation at a fundamental level, not just as a secondary feature of the condition.

These findings suggest hEDS may involve ongoing degradation of the extracellular matrix — the biological scaffolding that surrounds and supports cells — rather than a simple structural defect in collagen itself. The picture is becoming more complex, and more interesting.

It's Not Just Joints

One of the reasons EDS gets missed so often is that clinicians focus on the most visible feature — hypermobile joints — and miss everything else. But EDS is a systemic condition, and its reach goes well beyond the musculoskeletal system.

Research is increasingly clear on the links between hEDS and:

• Dysautonomia — disordered regulation of the autonomic nervous system, affecting heart rate, blood pressure, digestion, and temperature control

• Postural Orthostatic Tachycardia Syndrome (POTS) — a form of dysautonomia that causes heart rate spikes on standing, dizziness, brain fog, and fatigue

• Mast Cell Activation Syndrome (MCAS) — where mast cells release excessive mediators, triggering wide-ranging symptoms including flushing, hives, gut problems, and anaphylaxis-like reactions

• Gastrointestinal dysmotility - slow gut movement, bloating, nausea, and motility disorders

• Neurological symptoms - including headaches, cognitive difficulties, and cervicogenic dizziness

• Neuropsychiatric features — including anxiety, depression, and — in emerging research — a striking overlap with ADHD

The co-occurrence of hEDS, POTS, and MCAS has become known informally as 'the trifecta'. A 2025 study confirmed what clinicians working with these patients have observed for years: these three conditions cluster together at rates far above chance, sharing probable mechanisms in immune dysregulation, autonomic dysfunction, and connective tissue vulnerability.

The ADHD Connection

This one raised eyebrows when it started appearing in the research (including mine when I first learnt about it!) — but the data is hard to ignore. Studies now suggest that approximately half of people with ADHD are hypermobile, and ADHD is significantly over-represented in people with hEDS and HSD. A 2025 paper in the European Psychiatry journal examined the overlap between ADHD, hypermobility syndromes, immune dysfunction, and autonomic dysregulation, and found associations that are increasingly difficult to dismiss as coincidence.

The proposed mechanism involves chronic neuroinflammation and dysautonomia affecting attention and executive function. It's an emerging field, and causality hasn't been established — but it's changing how many clinicians approach both conditions.

Pain: The Feature That's Still Most Misunderstood

A person sitting with their head in their hands, expressing visible distress and pain, illustrating the chronic pain experienced by many people living with Ehlers-Danlos Syndrome. — Nearly 95% of EDS patients have been told at some point that their symptoms are psychological. Not by psychiatrists making a clinical judgement — by doctors who didn't recognise what they were looking at. Twenty-two years is the average time between first symptoms and diagnosis. That's not a patient failing to advocate for themselves. That's a systemic failure of medical education. You were right. The system let you down.

Chronic pain is the defining daily experience for most people with EDS — and it's one of the least well-managed aspects of the condition.

A major retrospective study published in late 2025 analysed self-reported treatment outcomes in 290 patients with hEDS or HSD. The findings were sobering: fewer than 30% of patients reported meaningful improvement in pain from any of the 17 treatment modalities they were asked about.

The treatments most commonly used included rest, heat therapy, massage, oral medication, and exercise. Physical activity and exercise showed the strongest signal for benefit — but even then, results were modest and highly individual.

Chiropractic care was used by around 48% of hEDS patients in one 2023 survey, making it one of the more commonly sought therapies. Case reports published in 2025 in the Journal of Contemporary Chiropractic document symptomatic improvement in secondary musculoskeletal symptoms with gentle, low-force techniques — the key word being gentle. High-velocity manipulation is generally contraindicated in hypermobile patients due to the risk of further destabilising already lax joints.

At Right Track, we use McTimoney chiropractic — a light-touch, whole-body approach that works with the nervous system rather than forcing joints. For patients with hypermobility, this is exactly the kind of low-risk, high-precision care that makes sense. We're not trying to 'crack' anything into place — we're working with your body's own regulatory systems.

The broader picture for EDS pain management is shifting toward multimodal, multidisciplinary approaches: combining physical rehabilitation, pain psychology, pacing strategies, dietary support, and appropriate medical management of co-occurring conditions. No single intervention is a magic bullet — and anyone telling you otherwise is selling something.

What Good Management Looks Like

Given the systemic nature of EDS and the complexity of its presentations, effective management requires a team — and a clinician who understands that the goal isn't to 'fix' hypermobility (you can't), but to reduce symptom burden and improve quality of life.

Evidence-backed elements of good EDS management include:

•Targeted strength and stability work — building muscle around hypermobile joints to provide the structural support the connective tissue can't. Low-impact, progressive, and supervised.

•Proprioceptive training — improving the body's positional awareness, which is often impaired in hEDS, to reduce injury risk and improve joint control.

•Pacing — managing energy and activity levels to avoid the boom-and-bust cycle that drives flares. Especially important when fatigue and POTS are part of the picture.

•Pain education — understanding how central sensitisation works in chronic pain conditions, and why the nervous system can amplify signals even when tissue damage isn't the primary driver.

•Management of co-occurring conditions — addressing POTS, MCAS, gut dysmotility, and other systemic features with appropriate medical support.

•Psychological support — not because the symptoms are psychological, but because living with a complex, poorly-understood chronic condition is genuinely hard, and support helps.

Kinesiology taping has shown some short-term benefit for shoulder pain and joint proprioception in hEDS — useful as an adjunct, though not a standalone treatment. Similarly, splints and braces can provide support during high-demand activities, with the important caveat that over-reliance can weaken the muscles you need most.

Where Research Is Heading

The pace of EDS research has accelerated considerably in the last five years, and the trajectory is encouraging.

The Road to 2026 framework — due for publication in December 2026 — will represent the most significant update to EDS classification in nearly a decade. It aims to produce updated diagnostic criteria, clearer clinical pathways for non-specialist clinicians, and accessible multilingual resources for patients. There are also plans for an interactive digital diagnostic tool that could dramatically reduce the number of clinicians who simply don't know what they're looking at.

On the biology side, multi-omics approaches — combining genomics, proteomics, and other data — are starting to unpick the mechanisms behind vascular EDS and other subtypes at a level of detail that wasn't possible before. Mouse models have been developed for all 14 EDS subtypes, opening the door to more targeted treatment research.

And for hEDS specifically, the identification of potential plasma biomarkers means that — for the first time — there is a realistic pathway toward an objective diagnostic test. That would be genuinely transformative.

What This Means If You're Sitting With a Diagnosis - Or Chasing One

If you've been recently diagnosed with EDS or HSD, or you're still in the diagnostic wilderness: your symptoms are real, they are complex, and they deserve proper clinical attention. The research is catching up, and the clinical frameworks are improving.

What you need is:

• A GP or specialist who takes your presentation seriously and thinks systemically

• A manual therapist who understands hypermobility and won't make things worse with inappropriate force

• A rehabilitation approach that focuses on stability, proprioception, and pacing — not pushing through pain

• Access to information about co-occurring conditions — because EDS rarely comes alone

If you've been told 'it's just hypermobility' and sent on your way, that's not good enough. Hypermobility as a symptom deserves proper assessment. The Beighton Score is a starting point, not an endpoint.

At Right Track Chiropractic in Paddington, we see hypermobile patients regularly. Our McTimoney approach is specifically suited to complex musculoskeletal presentations — we work with you to understand your full picture, not just the joint that's hurting loudest today.