Understanding hEDS
Exploring symptomatic hypermobility through the lens of hEDS
What is hEDS?
hEDS stands for hypermobile Ehlers-Danlos Syndrome.
hEDS is understood as a heritable connective tissue disorder, but unlike many other EDS subtypes, its exact genetic cause has not yet been identified. It is thought to involve differences in connective tissue function, which may contribute to joint, skin, pain, fatigue, and multi-system features.
Despite this, it is still considered a rare condition and is often under-recognised and underdiagnosed.
This can lead to:
generalised joint hypermobility
joint instability
ongoing symptoms such as pain and fatigue
effects across multiple body systems
hEDS is one way symptomatic hypermobility may be described when a person meets specific diagnostic criteria.
Common Features seen in hEDS
These features can vary widely, and not everyone will experience all of them.
Not everyone experiences hEDS in the same way, and no two people will have the exact same experience.
Common Body Features
joint hypermobility
joint instability
chronic pain
mild skin hyperextensibility
abnormal or atrophic scarring
Common Associated Features
chronic fatigue
gastrointestinal symptoms
autonomic symptoms (e.g. dizziness, heart rate changes)
headaches
allergy-like or mast cell activation-type symptoms
Not everyone will experience all of these.
How is hEDS Diagnosed?
hEDS is currently diagnosed using the 2017 international diagnostic criteria.
Diagnosis is based on three key areas:
Generalised joint hypermobility
→ screened using tools such as the Beighton score
Systemic features
→ includes musculoskeletal and systemic features, as well as family history and pain patterns
Exclusion of other conditions
→ ensuring symptoms are not better explained by another condition
About the Beighton score
The Beighton score is a screening tool used to assess generalised joint hypermobility- NOT a definitive measure of hypermobility.
It does not capture all presentations of hypermobility and should be interpreted within the broader clinical context, particularly where symptoms or history suggest hypermobility is present.
These criteria are part of a structured clinical assessment and are interpreted within the context of the individual.
Diagnosis can be complex and is usually made by a clinician experienced in connective tissue conditions.
hEDS is one way of understanding symptomatic hypermobility- but it is only one part of the full picture.
Still making sense of your body?
These labels describe patterns — but they don’t always capture the full picture.
You can explore this in a way that feels most helpful for you.