Hypermobility Spectrum Disorder (HSD) and Hypermobility Ehlers-Danlos Syndrome (hEDS): How Physiotherapy Can Help.

Written by Andreea Brown - Physiotherapist -

Did you know May is hypermobility and EDS awareness month? It's the perfect opportunity to deepen our understanding of connective tissue disorders and advocate for individuals living with HSD and hEDS! 

Hypermobility Spectrum Disorder (HSD) is a connective tissue disorder in which joints move beyond the typical range of motion. While all individuals with HSD exhibit joint hypermobility, the degree of hypermobility and its associated problems can vary significantly from person to person.

As a spectrum condition, HSD presents differently in each individual. Common issues may include: 

• Tendon, ligament or cartilage injury 

• Joint subluxations and/or dislocations

• Persistent or chronic pain

• Poor proprioception and sensory processing (altered joint position awareness)

  
  

Other systemic symptoms may also be present, including:

• Gastrointestinal issues

• Fatigue

• Dysautonomia (changes in autonomic function) 

• Headaches

• Anxiety and other mental health conditions

  
  

HSD is further classified based on the distribution of joint hypermobility: 

• Generalised HSD: widespread hypermobility throughout the body

• Historical HSD: a past history of hypermobility that is no longer present (often due to ageing or injury) 

• Localised HSD: hypermobility affecting one joint or a group of joints in a specific area

• Peripheral HSD: joint hypermobility of the hands and feet but no other areas 

Ehlers-Danlos Syndrome (EDS) refers to a group of 13 distinct genetic connective tissue disorders, each caused by abnormalities in the structure, production, or processing of collagen. As a multisystem condition, EDS can impact joints, muscles, blood vessels, and internal organs, leading to a wide range of clinical presentations. To differentiate the subtypes of EDS, there are clear diagnostic criteria and specific distinguishing features, however common features across all EDS subtypes include joint hypermobility, skin extensibility and fragility. 

While most subtypes of EDS are classified as rare, hypermobility EDS (hEDS) is the most common presentation, reflecting 90% of EDS cases. hEDS key features include, but are not limited to: 

• Joint hypermobility or instability 

• Chronic pain (persistent pain for more than 3 months)

• Poor proprioception 

• Mild skin hyperextensibility (skin that is stretchy) 

• Abnormal scarring 

• Frequent or recurring injuries without a specific mechanism of injury 

As previously mentioned hEDS is a multisystemic condition, reflecting the widespread role of connective tissue throughout the body. That means individuals with hEDS often experience a range of symptoms beyond the musculoskeletal system. Did you know that there is a high comorbidity between the following conditions and positive hEDS diagnosis! 

• Dysautonomia - including Postural Orthostatic Tachycardia Syndrome [POTS] = dizziness and other symptoms when transitioning from sitting to standing

• Fibromyalgia 

• Pelvic floor dysfunction 

• Gastrointestinal issues, including: poor gut transit/sluggish bowel, constipation/diarrhoea patterns, irritable syndrome and reflux)

• Mental health considerations: particularly anxiety and depression 

• Neurodivergence: ADHD, Autism 
  

Previous population studies suggested hEDS affected between 1 in 3,100 to approximately 1 in 5,000 individuals. However, growing awareness driven by advocacy groups such as The Ehlers-Danlos Society and increased clinical interest suggests that the actual prevalence may be significantly higher. Some literature suggests 1 in 500 individuals have hEDS. Improved recognition of the diagnostic criteria, greater understanding of the condition, better symptom recognition among healthcare professionals, and the re-evaluation of previously misdiagnosed patients with overlapping conditions have all contributed to this shift. 

While there have been some advancements and greater awareness of hEDS, we are still a long way from where we need to be. Misdiagnosis and delayed recognition are still common, access to appropriate care remains inconsistent, and many patients continue to face significant barriers in receiving timely and effective treatment.

Is it possible to differentiate between HSD and hEDS - Diagnostic criteria: 

HSD and hEDS both involve joint hypermobility and share many overlapping features in presentation and symptom burden. Many individuals experience significant physical, psychosocial and functional quality of life impacts regardless of their classification, and often present with symptomatology that spans both conditions. 

Assessment of suspected hypermobility typically begins with an evaluation of joint range of motion, utilising the Beighton Scale. The Beighton Scale assesses joint hypermobility, using a 9-point system that measures hyperextension of the 5th digit (pinky fingers), thumbs, knees, elbows and forward flexion of the spine.

To achieve a positive Beighton score, the following score needs to be reflected: 

• For paediatrics/pre-pubescent: 6/9 points in children

• For adults: score greater than or equal to 5/9 points

• Adults aged 50+: 4/9 points

Images sourced from The Ehlers-Danlos Society: https://www.ehlers-danlos.com/assessing-joint-hypermobility/

A supplemental questionnaire is also utilised to confirm generalised joint hypermobility. 

At Newcastle Aquatic Physiotherapy, our Physiotherapists are qualified to perform detailed assessments of joint mobility and hypermobility-related symptoms. Andreea and Rosie  has a special interest in assessment and management of hypermobility conditions. In addition to the Beighton score, a range of clinical tools may be used to support a comprehensive evaluation of joint hypermobility. 

If an individual's outcomes reflect a positive Beighton score, their other symptoms should be considered and a hEDS diagnosis needs to be ruled out for HSD confirmation.

hEDS diagnosis: 

Hypermobile Ehlers-Danlos Syndrome (hEDS) is diagnosed using the 2017 criteria developed by the International EDS Consortium. These must be applied by qualified health professionals, such as GPs or physiotherapists with specific training in EDS.

1. Generalised joint hypermobility (GJH),

2. Additional systemic features and family history,

3. Exclusion of other heritable or acquired connective tissue disorders.

   
   

A diagnosis of hEDS requires that all three criteria are met, and other conditions ruled out. Currently, genetic testing does not exist for hEDS. 

Importantly, not meeting the diagnostic criteria for hEDS does not mean that individuals with HSD are free from comorbidities or symptoms! This highlights the importance of a collaborative, multidisciplinary approach to care, involving GPs, specialists, and allied health professionals to provide tailored care for each individual.

Management - Why Physiotherapy?: 

While there’s no cure for HSD or hEDS, these conditions can be managed effectively with the right support.  A team-based approach is often most helpful, allowing for comprehensive care that addresses the complex and varied symptoms individuals may experience. Our role as Physiotherapists is not just to prescribe exercises but to listen, adapt, and work with hypermobile clients to support their unique goals. 

Physiotherapy is adapted based on your unique needs, which may include:

• Specific joints requiring support or strengthening

• Orthostatic intolerance (e.g., lightheadedness or fatigue when sitting or standing)

• Digestive sensitivities

• Pain sensitivity or flare-up management

• Day-to-day symptom variability

• Neurodivergence — including sensory considerations, executive function, environment, and accessibility

What does the research say - Is there a gold-standard for exercise? 

Current evidence highlights the value of multidisciplinary care for those living with HSD or hEDS. Physiotherapy-led exercise programs, particularly those focused on strength, stability, and motor control, have shown positive outcomes.

Although a gold-standard protocol doesn’t yet exist, many studies report benefits from structured, progressive exercise programs. Key components of physiotherapy management for hypermobility include:

• Guided exercise within safe and controlled ranges to minimise the risk of joint injury

• Proprioceptive training to improve the brain’s awareness of joint position, supporting more stable and confident movement

• Progressive resistance training, including the safe use of heavier loads over time

• Balanced programming, with adequate rest between sessions to allow for muscle recovery and adaptation

Emerging Evidence: The GEAR Protocol 

Exciting research is currently emerging, including work in Canada on the GEAR (GoodHope Exercise and Rehabilitation) protocol; an eight-week resistance training program tailored specifically to individuals with HSD and hEDS. More research in this space is exciting and highly anticipated.

If you identify with hypermobility or the features mentioned above, we’d love to support your journey. Book in with one of our caring CLOs at Newcastle Aquatic Physiotherapy — our physiotherapists are here to help. With the right support, movement can become a tool for building strength, resilience, and confidence.

References: 

• Buryk-Iggers, S., Mittal, N., Santa Mina, D., & others. (2022). Exercise and rehabilitation in people with Ehlers-Danlos syndrome: A systematic review. Archives of Rehabilitation Research and Clinical Translation, 4(2), 100189. https://doi.org/10.1016/j.arrct.2022.100189

  
  

• Castori, M., Tinkle, B., Levy, H., Grahame, R., Malfait, F., & Hakim, A. (2017). A framework for the classification of joint hypermobility and related conditions. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175C(1), 148–157. https://doi.org/10.1002/ajmg.c.31539

  
  

• Cederlöf, M., Larsson, H., Lichtenstein, P., Almqvist, C., Serlachius, E., & Ludvigsson, J. F. (2016). Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings. BMC Psychiatry, 16, 207. https://doi.org/10.1186/s12888-016-0922-6

  
  

• Gebehart, C., & Büschges, A. (2024). The processing of proprioceptive signals in distributed networks: Insights from insect motor control. Journal of Experimental Biology, 227(1), jeb246182. https://doi.org/10.1242/jeb.246182

• Harris, D. (2024, December). Hypermobility, Ehlers Danlos, and Fibromyalgia. The EDS Clinic. https://www.eds.clinic/articles/hypermobility-ehlers-danlos-fibromyalgia-link

  
  

• Juul-Kristensen, B., Schmedling, K., Rombaut, L., Lund, H., & Engelbert, R. H. H. (2017). Measurement properties of clinical assessment methods for classifying generalized joint hypermobility—a systematic review. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175C(1), 116–147. https://doi.org/10.1002/ajmg.c.31540

  
  

• Mittal, N., Santa Mina, D., Buryk-Iggers, S., Lopez-Hernandez, L., Hussey, L., Franzese, A., Katz, J., Laflamme, C., McGillis, L., McLean, L., Rachinsky, M., Rozenberg, D., Slepian, M., Weinrib, A., & Clarke, H. (2021). The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders. Frontiers in Rehabilitation Sciences, 2, Article 769792. https://doi.org/10.3389/fresc.2021.769792

  
  

• Petrucci, T., & others. (2024). Phenotypic clusters and multimorbidity in hypermobile Ehlers-Danlos syndrome. Mayo Clinic Proceedings: Innovations, Quality & Outcomes, 8(3), 253–262. https://doi.org/10.1016/j.mayocpiqo.2024.01.003

  
  

• The Ehlers-Danlos Society. (n.d.). What is Ehlers-Danlos syndrome (EDS)? https://www.ehlers-danlos.com/what-is-eds/