Understanding the hEDS Diagnostic Criteria (2017)

If you’ve looked up the diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS), you may have found them dense, technical, and difficult to interpret. Many people come away feeling more confused than before.

This article walks through the 2017 criteria step by step, in plain language. It’s educational only — diagnosis should always be made by a qualified clinician — but understanding the framework can help you make sense of your experience.

Why Were New Criteria Introduced?

Before 2017, the term “joint hypermobility syndrome” was often used interchangeably with hypermobile EDS. This created inconsistency. Some people were diagnosed very loosely; others were missed entirely.

The 2017 international classification aimed to:

  • Create clearer boundaries around hEDS
  • Reduce over- and under-diagnosis
  • Separate hEDS from other types of EDS and from generalised hypermobility

Importantly, there is still no confirmed genetic marker for hEDS. Diagnosis remains clinical — meaning it is based on patterns of signs, symptoms, and history rather than a single blood test.

The Three-Part Structure of the hEDS Criteria

To meet diagnostic criteria for hEDS, all three criteria must be satisfied.

Each one looks at a different aspect of how the condition presents.

Criterion 1: Generalised Joint Hypermobility

This section assesses whether your joints move beyond the typical range.

The most common tool used is the Beighton score, a 9-point scoring system that looks at specific movements, including elbow extension, knee extension, thumb flexibility, and forward spinal flexion.

The cut-off score depends on age:

  • Children and adolescents require a higher score
  • Adults require a moderate score
  • Older adults have a lower cut-off due to natural loss of flexibility over time

If someone falls just below the cut-off, historical hypermobility (for example, being able to do the splits or frequent childhood flexibility) may still be considered.

It’s important to know that hypermobility alone is common. Many people are flexible and do not have hEDS. Criterion 1 simply establishes that generalised joint laxity is present — it does not confirm hEDS on its own.

Criterion 2: Features of a Connective Tissue Disorder

This section looks beyond flexibility.

Criterion 2 requires two or more of the following categories to be met:

A. Systemic Features of a Connective Tissue Condition

These are physical characteristics associated with connective tissue differences. They may include:

  • Soft or velvety skin
  • Mild skin hyperextensibility
  • Unexplained stretch marks
  • Recurrent hernias
  • Pelvic organ prolapse
  • Dental crowding and high palate
  • Arachnodactyly (long fingers)

Not everyone will have all of these. The criteria require a specific number to be present.

B. Positive Family History

A first-degree relative independently meeting diagnostic criteria for hEDS strengthens the case. Because no gene has yet been identified, family history plays an important role.

C. Musculoskeletal Complications

This includes patterns such as:

  • Chronic, widespread pain
  • Recurrent joint dislocations or instability
  • Joint pain lasting more than three months

This section acknowledges that hEDS is not simply about being flexible — it involves tissue fragility and functional impact.

Criterion 3: Exclusion of Other Diagnoses

The final criterion is often the most overlooked.

Before confirming hEDS, clinicians must rule out:

  • Other types of EDS (such as classical or vascular types)
  • Other heritable connective tissue disorders (such as Marfan syndrome)
  • Autoimmune or rheumatologic conditions
  • Acquired causes of joint hypermobility

This exclusion process is important for safety. Some connective tissue conditions carry different risks and require different monitoring.

It also helps ensure that hypermobility related to deconditioning, trauma, or other medical causes is not mislabelled as hEDS.

What the Criteria Don’t Capture Well

While the 2017 framework improved clarity, many clinicians and patients recognise its limitations.

The criteria focus heavily on musculoskeletal and structural features. They do not formally include many symptoms that are commonly reported in people with hEDS, such as:

  • Dysautonomia and POTS
  • Mast cell activation symptoms
  • Gastrointestinal dysmotility
  • Sensory processing differences
  • Fatigue patterns

These experiences are real and increasingly recognised in clinical practice, but they are not required to meet diagnostic criteria.

This gap can leave some people feeling invalidated if their most disabling symptoms are not explicitly listed.

Common Sources of Confusion

One of the most common misunderstandings is assuming that a high Beighton score automatically means hEDS. It does not. Many people have generalised hypermobility spectrum disorder (HSD), which may share overlapping symptoms but does not meet full hEDS criteria.

Another source of distress is narrowly missing a threshold. Because the criteria are categorical — you either meet them or you don’t — people who fall just short can feel dismissed. In reality, hypermobility-related conditions exist along a spectrum, and functional support should not depend solely on labels.

A Gentle Perspective

Diagnostic frameworks are tools. They are designed for research consistency and clinical safety — not to measure the legitimacy of your suffering.

If you meet criteria for hEDS, the label can guide appropriate monitoring and support. If you do not, but still experience significant hypermobility-related symptoms, that experience remains valid and deserving of care. The most important question is not only “Do I meet criteria?” but also “What support does my body need?”

When to Seek Assessment

If you experience significant joint instability, chronic pain, frequent dislocations, or a strong family history of connective tissue disorders, a formal assessment with a clinician experienced in hypermobility conditions may be helpful.

Urgent medical review is important if there are features suggestive of more serious connective tissue disorders, such as unexplained vascular events or significant organ complications.

Closing Thoughts

The hEDS diagnostic criteria aim to create clarity, but they cannot fully capture the lived complexity of hypermobility conditions.

Whether you are newly diagnosed, exploring the possibility, or supporting a family member, understanding the framework can reduce uncertainty. And if parts of your experience fall outside the checklist, that does not mean they are imagined or insignificant.

Your body’s patterns matter — even when they are nuanced.

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