Ehlers-Danlos Syndrome (EDS)
What is Ehlers-Danlos syndrome?
Ehlers-Danlos syndrome (EDS) is a group of hereditary connective tissue disorders caused by defects in the structure, production or processing of collagen — the protein that provides strength, elasticity and structure to connective tissues throughout the body. Because connective tissue is present in virtually every organ system, EDS is a multi-system condition that can affect joints, skin, blood vessels, internal organs, the autonomic nervous system and more.
The Ehlers-Danlos Society currently recognises thirteen subtypes of EDS, each caused by specific genetic mutations and with distinct clinical features. The most common by far is hypermobile EDS (hEDS), which accounts for the vast majority of EDS diagnoses and is the subtype most frequently seen in physiotherapy practice. Unlike the other subtypes, hEDS does not yet have a confirmed genetic marker — diagnosis is clinical, based on the 2017 diagnostic criteria. Other subtypes including classical EDS, vascular EDS, kyphoscoliotic EDS and dermatosparaxis EDS each have specific genetic tests available.
The distinction between hEDS and hypermobility spectrum disorder (HSD) is clinically important but frequently misunderstood — HSD encompasses presentations that meet some but not all criteria for hEDS. Both conditions share the same physiotherapy management approach, and many clinicians and researchers now advocate managing them as a spectrum rather than distinct entities.
How common is EDS?
EDS is significantly more common than previously recognised. Historical estimates suggested an overall prevalence of around one in 5,000, but more recent data — particularly for hEDS — suggest prevalence may be considerably higher. It is significantly underdiagnosed, with many patients experiencing a diagnostic journey of five to ten years or more before receiving an accurate diagnosis. Women are more frequently diagnosed than men, though this likely reflects diagnostic bias rather than true difference in prevalence.
What are the features of EDS?
Features vary by subtype but the most common presentation — hEDS — typically includes generalised joint hypermobility, joint pain and instability, skin that is soft, velvety or mildly hyperextensible, easy bruising, fatigue, and a range of associated conditions including POTS and dysautonomia, chronic pain, gastrointestinal dysmotility, mast cell activation syndrome, anxiety and neurodivergence.
Joint hypermobility in EDS is assessed using the Beighton Score — a nine-point scale measuring flexibility at the knees, elbows, wrists, little fingers and spine — alongside assessment of generalised hypermobility across other joints and the presence of associated features. However the Beighton Score alone is not sufficient for diagnosis, and many people with significant EDS symptoms have scores below the threshold for generalised hypermobility on this scale.
Which joints are most commonly affected?
Virtually any joint can be affected in EDS, but the most commonly symptomatic are the knees, hips, shoulders, wrists and ankles. Knee hypermobility and instability, shoulder dislocations and instability, atlantoaxial instability and cervical instability are among the most clinically significant musculoskeletal manifestations. Cranio-cervical instability — instability at the junction between the skull and the upper cervical spine — occurs in a proportion of EDS patients and requires particularly careful management.
How can physiotherapy help with EDS?
Physiotherapy is one of the most evidence-based and clinically important interventions for EDS management — but it needs to be delivered by someone who genuinely understands the condition. Standard physiotherapy approaches designed for the general population are often inappropriate for EDS patients, and can cause harm if applied without understanding the specific precautions and principles that govern exercise and manual therapy in hypermobility conditions.
The core principles of EDS physiotherapy are:
Specific interventions that form part of EDS physiotherapy include deep stabilising muscle rehabilitation for the spine and individual joints, proprioception and joint position sense training, neuromuscular control work, real time ultrasound guided muscle retraining, hydrotherapy where available, and clinical Pilates — which is particularly well suited to EDS rehabilitation given its emphasis on controlled, precise movement and the ability to precisely modulate load.
For patients with co-occurring POTS or dysautonomia, cardiovascular and autonomic management is integrated alongside the musculoskeletal work. For those with chronic pain, pain neuroscience education and a graded activity approach are incorporated.
Why choose Articulate for EDS physiotherapy?
Our physiotherapist Yulia Khasyanova holds multiple certifications through the Ehlers-Danlos Society and is one of a small number of physiotherapists in Brisbane with specialist training in EDS and related hypermobility conditions. She has a particular interest in the complex multi-system presentations that accompany systemic connective tissue disorders, and brings both clinical experience and ongoing professional development in this specialised area.
Our Exercise Physiologist Ash O'Regan works alongside Yulia for patients where the cardiovascular, fatigue and broader fitness components of EDS require an exercise physiology approach alongside physiotherapy.
The Ehlers-Danlos Society is the leading international resource for EDS patients and provides information on diagnosis, management and finding knowledgeable clinicians. In Australia, Hypermobility Connect Australia and the Connective Tissue Disorders Network Australia provide peer support, resources and advocacy for people living with EDS and related conditions.
Telehealth appointments are available for patients outside the Brisbane area who are unable to access knowledgeable EDS physiotherapy locally.
To book or find out more, call us on 07 3706 3407 or book online below. We see patients from across Brisbane's southside including Tarragindi, Coorparoo, Holland Park, Greenslopes and Mt Gravatt.
Ehlers-Danlos syndrome (EDS) is a group of hereditary connective tissue disorders caused by defects in the structure, production or processing of collagen — the protein that provides strength, elasticity and structure to connective tissues throughout the body. Because connective tissue is present in virtually every organ system, EDS is a multi-system condition that can affect joints, skin, blood vessels, internal organs, the autonomic nervous system and more.
The Ehlers-Danlos Society currently recognises thirteen subtypes of EDS, each caused by specific genetic mutations and with distinct clinical features. The most common by far is hypermobile EDS (hEDS), which accounts for the vast majority of EDS diagnoses and is the subtype most frequently seen in physiotherapy practice. Unlike the other subtypes, hEDS does not yet have a confirmed genetic marker — diagnosis is clinical, based on the 2017 diagnostic criteria. Other subtypes including classical EDS, vascular EDS, kyphoscoliotic EDS and dermatosparaxis EDS each have specific genetic tests available.
The distinction between hEDS and hypermobility spectrum disorder (HSD) is clinically important but frequently misunderstood — HSD encompasses presentations that meet some but not all criteria for hEDS. Both conditions share the same physiotherapy management approach, and many clinicians and researchers now advocate managing them as a spectrum rather than distinct entities.
How common is EDS?
EDS is significantly more common than previously recognised. Historical estimates suggested an overall prevalence of around one in 5,000, but more recent data — particularly for hEDS — suggest prevalence may be considerably higher. It is significantly underdiagnosed, with many patients experiencing a diagnostic journey of five to ten years or more before receiving an accurate diagnosis. Women are more frequently diagnosed than men, though this likely reflects diagnostic bias rather than true difference in prevalence.
What are the features of EDS?
Features vary by subtype but the most common presentation — hEDS — typically includes generalised joint hypermobility, joint pain and instability, skin that is soft, velvety or mildly hyperextensible, easy bruising, fatigue, and a range of associated conditions including POTS and dysautonomia, chronic pain, gastrointestinal dysmotility, mast cell activation syndrome, anxiety and neurodivergence.
Joint hypermobility in EDS is assessed using the Beighton Score — a nine-point scale measuring flexibility at the knees, elbows, wrists, little fingers and spine — alongside assessment of generalised hypermobility across other joints and the presence of associated features. However the Beighton Score alone is not sufficient for diagnosis, and many people with significant EDS symptoms have scores below the threshold for generalised hypermobility on this scale.
Which joints are most commonly affected?
Virtually any joint can be affected in EDS, but the most commonly symptomatic are the knees, hips, shoulders, wrists and ankles. Knee hypermobility and instability, shoulder dislocations and instability, atlantoaxial instability and cervical instability are among the most clinically significant musculoskeletal manifestations. Cranio-cervical instability — instability at the junction between the skull and the upper cervical spine — occurs in a proportion of EDS patients and requires particularly careful management.
How can physiotherapy help with EDS?
Physiotherapy is one of the most evidence-based and clinically important interventions for EDS management — but it needs to be delivered by someone who genuinely understands the condition. Standard physiotherapy approaches designed for the general population are often inappropriate for EDS patients, and can cause harm if applied without understanding the specific precautions and principles that govern exercise and manual therapy in hypermobility conditions.
The core principles of EDS physiotherapy are:
- Active over passive — strengthening and neuromuscular control are the foundation of EDS management, not stretching, mobilisation or manipulation. EDS patients are already too flexible. The goal is building the muscular support system around hypermobile joints, not increasing range of motion.
- Low and slow load progression — EDS patients typically need to start with much lower loads and progress much more gradually than the general population. The connective tissue's reduced tensile strength means that loads that would be appropriate for a non-hypermobile person can cause injury or symptom flare in EDS. This is not an indefinite limitation — with consistent, graded work, most EDS patients can build meaningful strength — but the pace needs to be calibrated carefully.
- Whole body rather than isolated — joint instability in EDS rarely exists in isolation. Managing the knee requires looking at the hip, the foot and the lumbopelvic control system. Managing the shoulder requires looking at the thoracic spine, scapular control and cervical stability. A siloed approach to individual joint problems produces limited results.
- Pacing and load management — many EDS patients experience post-exertional symptom worsening, sometimes called a crash, where activity beyond their current capacity produces a significant symptom flare that can last days or longer. Learning to identify and respect the energy envelope is a critical skill, and a good EDS physiotherapy program builds this awareness rather than encouraging pushing through symptoms.
Specific interventions that form part of EDS physiotherapy include deep stabilising muscle rehabilitation for the spine and individual joints, proprioception and joint position sense training, neuromuscular control work, real time ultrasound guided muscle retraining, hydrotherapy where available, and clinical Pilates — which is particularly well suited to EDS rehabilitation given its emphasis on controlled, precise movement and the ability to precisely modulate load.
For patients with co-occurring POTS or dysautonomia, cardiovascular and autonomic management is integrated alongside the musculoskeletal work. For those with chronic pain, pain neuroscience education and a graded activity approach are incorporated.
Why choose Articulate for EDS physiotherapy?
Our physiotherapist Yulia Khasyanova holds multiple certifications through the Ehlers-Danlos Society and is one of a small number of physiotherapists in Brisbane with specialist training in EDS and related hypermobility conditions. She has a particular interest in the complex multi-system presentations that accompany systemic connective tissue disorders, and brings both clinical experience and ongoing professional development in this specialised area.
Our Exercise Physiologist Ash O'Regan works alongside Yulia for patients where the cardiovascular, fatigue and broader fitness components of EDS require an exercise physiology approach alongside physiotherapy.
The Ehlers-Danlos Society is the leading international resource for EDS patients and provides information on diagnosis, management and finding knowledgeable clinicians. In Australia, Hypermobility Connect Australia and the Connective Tissue Disorders Network Australia provide peer support, resources and advocacy for people living with EDS and related conditions.
Telehealth appointments are available for patients outside the Brisbane area who are unable to access knowledgeable EDS physiotherapy locally.
To book or find out more, call us on 07 3706 3407 or book online below. We see patients from across Brisbane's southside including Tarragindi, Coorparoo, Holland Park, Greenslopes and Mt Gravatt.
