Bendy for a Reason: Understanding Ehlers-Danlos Syndrome

Most of us knew a kid who could bend their thumb back to their wrist or pop a shoulder out as a party trick. For some people, that flexibility is just a quirk. For others, it comes with daily pain, joints that slip out of place, crushing fatigue, and a long list of symptoms that seem to have nothing to do with each other.

That second group may be living with a hypermobility spectrum disorder or one of the Ehlers-Danlos syndromes (EDS). This post walks through what those terms mean, how they're diagnosed, what living with them looks like, and why the next few months are a big moment for this community. Understanding the difference between joint hypermobility, hypermobility spectrum disorder (HSD), and hypermobile EDS (hEDS) can help you get the right diagnosis and the right care.

What is Ehlers-Danlos Syndrome?

The Ehlers-Danlos syndromes are a group of inherited connective tissue disorders. Connective tissue, built largely from collagen, gives strength and structure to skin, joints, ligaments, blood vessels, and organs. In EDS, that tissue is more fragile or stretchy than usual.

The 2017 international classification described 13 types of EDS, and researchers have identified at least one more since. Most types have a known genetic cause and can be confirmed with genetic testing. The exception is hypermobile EDS (hEDS), by far the most common type, which is still diagnosed clinically because no gene has yet been confirmed.

Joint Hypermobility, HSD, and hEDS: What's the Difference?

• Joint hypermobility: Joints that move beyond the typical range. On its own, this is a trait, not a diagnosis, and it's common in children, women, and some ethnic groups.

• Hypermobility spectrum disorder (HSD): Joint hypermobility that causes symptoms, such as pain, joint instability, or recurring injuries, in someone who doesn't meet the full criteria for hEDS. HSD is not a "milder" diagnosis; symptoms can be just as significant.

• Hypermobile EDS (hEDS): A diagnosis that requires generalized joint hypermobility plus specific additional features: signs of a systemic connective tissue disorder (such as soft, stretchy skin, unusual scarring, or hernias), a family history, and/or musculoskeletal complications, along with ruling out other conditions.

Common EDS Symptoms

EDS symptoms vary widely, even within the same family. Common features in hEDS and HSD include:

• Chronic joint and muscle pain

• Joint instability, with frequent sprains

• Subluxation (a partial dislocation, where the joint slips & returns) and dislocation (where it is fully out of place)

• Soft, velvety, or stretchy skin and easy bruising

• Slow or unusual wound healing

• Fatigue

• Problems with body awareness (proprioception) and coordination

Many people with hEDS or HSD also experience conditions that commonly occur alongside them, such as postural orthostatic tachycardia syndrome (POTS), digestive problems, mast cell activation symptoms, anxiety, and headaches. These are associated conditions rather than diagnostic criteria.

How is EDS Diagnosed?

Diagnosis usually starts with a detailed history and physical exam. Clinicians such as your PCP or rheumatologist often use the Beighton score, a nine-point test of joint flexibility at the fingers, thumbs, elbows, knees, and spine. The score needed to count as generalized joint hypermobility depends on age. Your provider will also look at skin, scarring, and family history and rule out other causes.

For most EDS types, genetic testing confirms the diagnosis. For hEDS, diagnosis relies on the clinical criteria. According to the Ehlers-Danlos Society, there is currently no reliable laboratory test to confirm or rule out hEDS or HSD. Many people wait years for a diagnosis, so it helps to see a clinician familiar with hypermobility.

What's Changing in 2026

The Ehlers-Danlos Society's "Road to 2026" initiative is reviewing the 2017 criteria, which many clinicians and patients have found too restrictive. The project includes the HEDGE study, a large genetic study of people with hEDS, and a global review of the hEDS and HSD criteria.

Key dates:

• December 2, 2026: An updated classification framework for all types of EDS and HSD is scheduled for publication in the American Journal of Medical Genetics Part C.

• March 2027: A diagnostic pathway to guide clinicians in diagnosing EDS and HSD is expected to follow.

The final criteria haven't been published yet, so no one can say exactly what will change. Some experts expect the update to be more inclusive and to define HSD more clearly, but anyone with a current diagnosis should talk to their care team once the new framework is released rather than assume their diagnosis will change.

How Physical Therapy Helps Hypermobility

There's no cure for EDS or HSD, but the right care can make a real difference. Physical therapy is one of the most important tools for managing joint hypermobility. A therapist experienced with hypermobility will focus on:

• Stability over stretching: Many hypermobile people feel "tight" and stretch often, but what their joints usually need is strength and control.

• Progressive strengthening: Building muscle support around unstable joints, starting low and progressing slowly to avoid flare-ups.

• Proprioception training: Improving the sense of where your joints are in space, which can reduce subluxation and injury.

• Pacing and graded activity: Managing fatigue and pain while building tolerance over time.

• Joint protection strategies: Practical tips for posture, lifting, sleep positions, and daily tasks.

• Bracing or taping: Short-term support in specific situations, when appropriate.

Care often works best as a team, including a physician, physical therapist, and sometimes occupational therapy, cardiology, or gastroenterology for associated conditions.

When to Seek Care

Being “bendy”  isn't a problem in itself. But if flexibility comes with pain, instability, exhaustion and a scatter of unexplained symptoms, that pattern has a name, and there is help. With new diagnostic criteria arriving in December, this is a good moment to learn more, get assessed, and push for care that treats you as a  whole person! If you have flexible joints along with ongoing pain, frequent sprains, subluxations, or dislocations, it's worth talking to your healthcare provider. 

If you have been diagnosed and are seeking care, our physical therapists understand and are trained in treating hypermobility. Schedule an evaluation with our team and we'll build a plan to help you move with more confidence.