Understanding EDS Beyond Hypermobility.
May is Ehlers-Danlos Syndromes (EDS) Awareness Month, an important opportunity to raise awareness of a group of inherited connective tissue disorders that remain widely misunderstood and underdiagnosed.
According to The Ehlers-Danlos Society, there are 13 distinct types of EDS, each affecting connective tissue, including joints, skin, blood vessels, and internal organs. Hypermobile EDS (hEDS) is the most common subtype, accounting for approximately 90% of EDS cases and is estimated to affect at least 1 in 3,100–5,000 people, though true prevalence is likely underestimated due to delayed diagnosis and misdiagnosis. (ehlers-danlos.com)
At Pole Kinetics PT, we understand that EDS extends far beyond flexibility. For many individuals, it can involve:
- Chronic musculoskeletal pain
- Joint instability, sprains, and dislocations.
- Persistent fatigue.
- Poor proprioception (body awareness).
- Autonomic dysfunction.
- Reduced confidence in movement.
Why Awareness Matters.
The journey to diagnosis is often prolonged. The Ehlers-Danlos Support UK notes that many individuals wait years or even decades for an accurate diagnosis due to poor professional awareness and symptom overlap with conditions such as fibromyalgia, ME/CFS, and IBS. (ehlers-danlos.org)
This delay can significantly impact quality of life, leaving many individuals without appropriate management strategies during critical years.
Hypermobility Spectrum Disorders (HSD) and hEDS: Understanding the Wider Spectrum.
It is important to recognise that not all symptomatic hypermobility falls under a formal hEDS diagnosis.
Following the 2017 International Classification, individuals with symptomatic joint hypermobility who do not meet full hEDS criteria may be diagnosed with Hypermobility Spectrum Disorder (HSD).
According to The Ehlers-Danlos Society:
- hEDS sits at one end of the hypermobility spectrum.
- HSD includes individuals with significant pain, instability, injury risk, and functional limitations despite not meeting full diagnostic thresholds.
- Management principles for hEDS and HSD are often similar.
Current estimates suggest the combined prevalence of hEDS and HSD may affect approximately 1 in 600–900 people, highlighting that symptomatic hypermobility is likely far more common than traditionally recognised.
This distinction matters clinically, as many hypermobile individuals experience substantial physical limitations regardless of diagnostic label.
From a physiotherapy perspective, whether someone has hEDS or HSD, the priority remains:
- Joint protection.
- Stability training.
- Symptom management.
- Functional strength.
- Fatigue pacing.
At Pole Kinetics PT, we advocate for treating the individual, not simply the diagnosis, recognising that hypermobility syndromes exist on a continuum.
The Physiotherapy Role in EDS Management.
While EDS currently has no cure, physiotherapy is considered a cornerstone of long-term management.
Evidence-informed physiotherapy can help by:
- Improving muscular strength to support joint stability.
- Enhancing proprioception and neuromuscular control.
- Reducing injury frequency.
- Supporting pain management strategies.
- Encouraging pacing and fatigue management.
- Building confidence in safe movement.
For individuals with EDS, rehabilitation should prioritise stability over excessive flexibility, as overstretching can worsen joint instability.
Specialist Movement is Essential.
Generic exercise prescriptions may not adequately support hypermobile individuals. Effective rehabilitation requires understanding:
- Tissue fragility.
- Joint laxity.
- Nervous system sensitivity.
- Fatigue management.
- Individual symptom variability.
At Pole Kinetics PT, our physiotherapy-led approach focuses on:
- Functional strength.
- Controlled mobility.
- Stability training.
- Proprioceptive development.
- Individualised progression.
Our goal is to help clients improve movement resilience without increasing symptom burden.
Key Facts About EDS (ehlers-danlos.com).
- 13 recognised subtypes of EDS exist worldwide.
- hEDS represents ~90% of diagnosed EDS cases.
- Estimated prevalence of hEDS: at least 1 in 3,100–5,000 individuals.
- Combined hEDS/HSD prevalence may be as high as 1 in 600–900.
- Diagnosis delays are common and span years or decades.
Raising Awareness This May.
EDS Awareness Month is about education, validation, and improving healthcare recognition.
Greater awareness can lead to:
- Earlier diagnosis.
- Improved access to specialist care.
- Better symptom management.
- Reduced injury burden.
- Enhanced quality of life.
Final Thoughts…
Living with EDS presents unique physical challenges, but physiotherapy and informed movement strategies can play a transformative role. With appropriate support, individuals can improve strength, stability, and overall function while reducing pain and fear around movement. This May, Pole Kinetics PT stands with the EDS community in promoting awareness, evidence-based care, and compassionate rehabilitation.
At Pole Kinetics PT, we believe movement should empower, not overwhelm.
Jane x
Chartered Physiotherapist & Founder of Pole Kinetics PT
Above is the Hypermobility Syndromes Quick Reference Guide, created by Kim Clayden and Dr Philip Bull, which is a practical evidence-based poster designed to help clinicians, patients, and allied health professionals recognise hypermobility, identify associated comorbidities, and support clearer pathways toward diagnosis, management, and specialist referral.
But if you want an in-depth assessment, try our Assessing Hypermobility Spectrum Disorder (HSD) quiz below as a practical first step to identify signs of symptomatic hypermobility and determine whether further clinical assessment is warranted.