Hypermobility spectrum disorders (HSD) are heritable connective tissue disorders that typically present with joint hypermobility, instability, risk of injury and pain. 

Related problems can include fatigue, anxiety, headaches, gastrointestinal problems and autonomic dysfunction/dysautonomia.

 Hypermobile Ehlers-Danlos Syndrome (hEDS), a subset of the Ehlers-Danlos Syndromes (EDS), comprises 13 heritable connective tissue disorders characterised by joint hypermobility, joint instability, chronic pain, skin hyperextensibility and tissue fragility as well as other connective tissue problems. 

Unlike the other 12 subtypes, hEDS has not yet been linked to specific genes. 

Each person with hEDS may have a different collection of symptoms, adding to the difficulty in diagnosing the disorder. 

The combined prevalence of HSD and hEDS is estimated to be between one in 600 and one in 900 (The Ehlers-Danlos Society 2025). 

Diagnosing hypermobility disorders 

Because the underlying cause of an individual’s hypermobility is often unknown, diagnosing HSD and hEDS can be complex. 

The process of diagnosing an adult patient with HSD/hEDS relies on the diagnostic frameworks and criteria established by the International EDS Consortium in 2017 (Malfait et al 2017, Castori et al 2017). 

These identify the causative genetic basis of each of the EDS subtypes and provide a series of diagnostic criteria for hEDS/HSD, including assessments of hypermobility (using the Beighton score), skin hypermobility and the patient’s medical history to look at associated conditions and problems related to HSD/EDS. 

In children, diagnosis is more difficult because children naturally have more mobile joints. 

‘Diagnosis of hypermobile disorders in paediatrics is typically by exclusion of other causes,’ says APA Titled Paediatric Physiotherapist Nicole Pates MACP, who sees children with hypermobility disorders at her practice in Western Australia. 

In 2023, a diagnostic framework based on published evidence was launched by the Paediatric Working Group of the International Consortium on EDS and HSD (Tofts et al 2023), with some significant differences from the adult framework around hypermobility. 

‘The key points are that we are trying not to label children as having a lifelong hypermobility disorder until they reach skeletal maturity and we recommend avoiding labelling them as hypermobile until they hit the age of five. 

‘This allows for fluid movement between the different categories of the diagnostic framework because we know that their extent of joint hypermobility changes as they grow,’ says physiotherapist Professor Verity Pacey APAM, senior author of the framework.

‘[H]EDS doesn’t have a genetic test—it’s purely a clinical diagnosis. 

‘People need to be up to date with the diagnostic framework and use the right language so that we’re not making families and kids unnecessarily concerned and labelling them with a lifelong diagnosis that is not correct.’ 

Nicole says, ‘As a physio, you’re always trying to understand what is just flexibility and what is a connective tissue disorder, remembering that hypermobility can be associated with other genetic syndromes that might not have been diagnosed or considered. 

‘Kids change over time and sometimes the symptoms change and sometimes those diagnoses don’t become apparent until later. 

‘As physiotherapists we tend to look at the musculoskeletal system but we also need to consider the other impacts; if they’ve got widespread connective tissue dysfunction, you can see that with the right questioning.’ 

In fact, it may not be until a parent mentions that the child has ‘stretchy’ skin or systemic issues that the penny drops that it might be a form of EDS, says Nicole. 

There are difficulties with using a diagnosis of exclusion, of course, and Verity says that physiotherapists need to balance the possibility that a child has hypermobile joints with a concern that more serious things are going on. 

‘Not every hypermobile child needs a specialist review but they do need a medical check-over to ensure that there isn’t something else going on before they can be given a diagnosis. 

‘There are some serious life-limiting conditions that can masquerade as hypermobility, like Marfan syndrome and Loeys-Dietz syndrome, in that paediatric time period and as physios it’s not within our current scope of practice to be making that call,’ she says.

Treating the whole patient 

The variability in HSD/hEDS symptoms not only makes diagnosis difficult but also affects management of the patient’s condition. 

On top of that, many clinicians have limited understanding of HSD/hEDS and because the disorder wasn’t well recognised or diagnosed in the past, many adult patients have endured years of being misdiagnosed or even being told it’s all in their head. 

As a result, it’s important to look at all of the patient’s symptoms and problems to develop a management plan encompassing education, exercise and, where necessary, assistance from other healthcare professionals, says physiotherapist and researcher Dr Cliffton Chan APAM. 

His research at Macquarie University is focused on developing rehabilitation programs and clinical assessment tools for hypermobility disorders. 

Some of the patients Cliffton sees are elite athletes and performing artists who have been able to work with their hypermobility to compete or perform at the highest levels. 

‘If when they were young they did slow, progressive training and they keep to that path, they can do amazing things. 

‘That drops off when they have an injury, even a small ankle sprain, and they’re not allowed to train for four or five weeks. 

‘That’s when they plummet and sometimes that’s how it all escalates,’ he says. 

Others start from a much lower baseline, with both hypermobility and systemic issues, requiring a careful approach to prescribing lifestyle modifications, exercise and activities to slowly get them on the right path. 

‘Once you pass that initial baseline, though, their improvement can be as good as everyone else’s. 

‘They can put on muscle as long as we make sure that everything in their environment and lifestyle is good. 

‘I’ve seen patients really bounce up,’ Cliffton says. 

All management plans should start with a thorough assessment of the patient in order to understand exactly what their symptoms are and where the major problems lie. 

Cliffton recommends using ‘The Spider’, a diagnostic tool developed by British researcher Professor Jane Simmonds and her team that maps the answers to 31 questions across eight symptom domains onto a radar graph. 

The Spider provides a visual map of the major symptoms experienced by a patient, including pain, fatigue, neuromusculoskeletal, gastrointestinal, cardiac dysautonomia, depression, anxiety and urogenital symptoms (Ewer et al 2024). 

‘In the assessment, we see where their major problems are and that’s where we target our management,’ he says. 

He likes to teach his patients first aid for their joints—many HSD/ hEDS patients regularly experience painful subluxations and dislocations in their joints and need to know how to manage those episodes. 

‘I give them a toolkit of first aid management for their joints so that they don’t have to see me all the time—every time I see them, I’ll teach them what to do for another joint or two,’ Cliffton explains. 

Exercise and movement strategies are also a big part of HSD/ hEDS management and can include helping patients with motor control and posture, stabilising joints, easing muscle spasms and using exercise to manage pain. 

Braces, splints and other mobility aids might also be prescribed as a short- or long-term aid or to manage specific situations. 

When treating children, the big challenge for clinicians is to ensure that their patients can participate fully in all aspects of their lives—home, school and daily activities. That usually means engaging with the whole family, says Verity. 

‘We want them to be active and able to live lives like any other kids so we need to identify where there may be opportunities for us as physios to assist with that. 

‘The treatment itself is similar in terms of exercise and education but we take a whole-of-family approach across the field,’ she says.

Nicole notes that new problems often crop up as children’s lives transition from early childhood to kindergarten or primary school to high school, particularly through puberty. 

These changes in hormones and in physical, social, cognitive and emotional load mean that this time period should be closely monitored. 

They might suddenly start complaining of pain or tiredness or become more resistive about joining in activities with other children. 

‘We ask different questions to understand what’s happening in the child’s life and give them check-in points. 

‘For example, we might say to the family, “If they have injuries, if they can’t do things they used to be able to do, if they can’t do things that their friends are doing, if they are hitting puberty or new symptoms arise, come back and see us and we can make a new plan,”’ she says. 

As with adults who have HSD/hEDS, it all comes down to improving quality of life and empowering patients to achieve their life goals.

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