SECTION 4
Understanding hEDS & HSD
Where diagnostic labels fit within the spectrum of symptomatic hypermobility.
01- FROM HYPERMOBILITY TO DIAGNOSIS
When does hypermobility become a disorder?
Joint hypermobility itself is a physical characteristic, not automatically a disorder. In many people, the presence of joint hypermobility is simply a normal part of their lives that causes no issues or symptoms.
However, when hypermobility is associated with persistent pain, instability, recurrent injuries or other problems affecting function, we start talking about symptomatic hypermobility. This is where diagnoses such as HSD and hEDS may begin to be considered.
A clinical assessment then looks at the pattern of hypermobility, symptoms, history, other physical and systemic features, and whether another condition may better explain the presentation.
02- UNDERSTANDING HSD
Hypermobility Spectrum Disorder (HSD)
HSD is used to describe symptomatic joint hypermobility when the presentation isn't better explained by another condition, such as hEDS or another heritable connective tissue disorder.
HSD can involve pain, instability, recurrent injury and functional difficulties, alongside broader symptoms and associated conditions in some people.
Importantly, HSD does not mean mild hypermobility or less severe symptoms. Someone with HSD can experience significant symptoms and impacts on their everyday life.
Different patterns of HSD
HSD can be described in different patterns depending on where hypermobility is present in the body. These describe the distribution of hypermobility — not how severe someone's symptoms are.
03- UNDERSTANDING hEDS
hEDS= 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.
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.
04- THE OVERLAP
Different diagnoses can share a very similar experience.
HSD and hEDS, even though both are distinctive diagnosis, can have substantial overlap in clinical presentations.
People with either diagnosis may experience pain, instability, recurrent injuries, fatigue, reduced function and broader associated symptoms.
The distinction is based on diagnostic criteria, not how severely someone is impacted.
The current diagnostic classifications are a framework for describing what we observe; these will hopefully evolve, and become clearer, as research into the underlying biology and relationship between HSD and hEDS continues to develop.
05- THE LABEL ISN'T THE WHOLE PICTURE
Diagnosis isn't a severity scale.
Diagnostic labels can be useful. They give us language to describe patterns, can guide appropriate investigation and help healthcare professionals communicate about care.
But a diagnosis doesn't tell us everything about the person living with it.
Two people with hEDS may have very different symptoms and support needs. Someone with HSD may be considerably more affected than someone with hEDS, or vice versa.
Good care should be guided by the person's symptoms, function, goals and individual needs, rather than assuming what someone needs based on their diagnostic label alone.