Ehlers-Danlos Syndrome (EDS) refers to a group of inherited connective tissue disorders that affect the body’s ability to provide strength, stability and elasticity to tissues such as joints, skin, blood vessels and internal organs. Connective tissue is largely made up of collagen, a protein that helps hold the body together and allows it to tolerate everyday forces.
In people with EDS, genetic changes alter how collagen is made or how it functions. As a result, tissues may be more elastic, fragile or unstable than normal. This can lead to joint hypermobility, frequent injuries, chronic pain, skin changes and a range of other systemic symptoms.
There are currently 13 recognised subtypes of Ehlers-Danlos Syndrome. These subtypes vary significantly in severity and associated risks. Some forms cause relatively mild joint symptoms, while others, such as vascular EDS, can be life-threatening.
Physiotherapy for Ehlers-Danlos Syndrome plays a central role in management, particularly for hypermobile and classical forms. Physiotherapy focuses on improving joint stability, reducing pain, preventing injury, and supporting safe participation in daily activities, exercise and sport.
Key Facts
- Hypermobile Ehlers–Danlos syndrome (hEDS) is considered the most common subtype of Ehlers–Danlos syndrome 🔗
- Joint hypermobility, skin hyperextensibility and tissue fragility are hallmark features of Ehlers-Danlos Syndrome. 🔗
- Physiotherapy and exercise-based management are recommended as first-line treatment for hypermobile EDS. 🔗
Risk Factors
- Family history of Ehlers-Danlos Syndrome or joint hypermobility.
- Female sex, particularly for hypermobile EDS.
- History of frequent joint injuries or dislocations.
- Poor muscle strength or coordination.
Symptoms
- Joint hypermobility, often involving multiple joints.
- Frequent joint sprains, subluxations or dislocations.
- Chronic musculoskeletal pain.
- Soft, velvety or stretchy skin.
- Easy bruising or unexplained bruises.
- Delayed wound healing or unusual scarring.
- Fatigue that is disproportionate to activity levels.
- Digestive symptoms such as bloating, constipation or diarrhoea.
Aggravating Factors
- Repetitive joint loading or overuse.
- Poor postural habits or inefficient movement patterns.
- Deconditioning or low muscle strength.
- Periods of increased stress, illness or poor sleep.
Causes
Ehlers–Danlos syndrome (EDS) is a group of conditions that affects the body’s connective tissues, particularly collagen, which helps give joints, skin, and other tissues their strength and support. When collagen is altered, tissues can be more flexible and less stable, which may lead to joint hypermobility, recurring sprains or strains, and increased sensitivity to load. Most types of EDS run in families and are commonly inherited in a dominant pattern (meaning it can be passed down from one parent), while some rarer types require changes from both parents. Although EDS is something you’re born with, symptom severity varies widely and is influenced by factors such as strength, conditioning, posture, movement patterns, and injury history—areas that physiotherapy can help improve.
How Is It Diagnosed?
Diagnosing Ehlers-Danlos Syndrome can be complex and often requires input from multiple healthcare professionals. Diagnosis depends on the subtype suspected.
Assessment includes a detailed medical and family history, physical examination and, for some subtypes, genetic testing. Physiotherapists do not diagnose EDS but frequently identify features that prompt referral for medical assessment.
Investigations & Imaging
- Beighton Score
- A 9-point scoring system used to assess generalised joint hypermobility.
- Genetic testing
- Used to confirm many EDS subtypes, though no genetic marker exists for hypermobile EDS.
- Cardiac imaging
- May be required in certain subtypes to assess blood vessel or heart involvement.
Grading / Classification
- Hypermobile EDS (hEDS)
- Most common subtype, characterised by joint hypermobility, chronic pain and instability, diagnosed clinically.
- Classical EDS (cEDS)
- Marked skin hyperextensibility, fragile skin and joint hypermobility, often linked to COL5A1 or COL5A2 mutations.
- Vascular EDS (vEDS)
- Rare but severe subtype associated with arterial and organ fragility.
Physiotherapy Management
Physiotherapy management for Ehlers-Danlos Syndrome focuses on improving joint stability, reducing pain, preventing injury and supporting long-term function. Physiotherapy is particularly important in hypermobile EDS, where joint instability and pain are prominent.
Exercise
Exercise programs emphasise low-load strengthening to improve muscular support around hypermobile joints. Exercises are progressed gradually to avoid flare-ups, with a focus on control rather than flexibility.
High-impact or end-range stretching is generally avoided. Pilates-style exercises, resistance bands and bodyweight strengthening are commonly used.
Activity Modification
Activity modification includes pacing strategies, avoiding prolonged or repetitive joint loading, and adapting daily activities to reduce joint strain.
Manual Therapy
Manual therapy may be used cautiously for pain relief, but excessive joint mobilisation is avoided due to tissue fragility.
Bracing & Taping
Bracing and taping may be used to provide external joint support during activities or flare-ups, helping reduce instability and pain.
Education
Education is essential. Physiotherapists provide guidance on joint protection, remind patients that pain does not always indicate damage, and support long-term self-management strategies.
Other
Other strategies may include proprioception training, balance work, fatigue management and graded return to physical activity.
Other Treatments
Medical management may involve pain relief strategies and monitoring for systemic complications. Cardiovascular monitoring is essential for vascular EDS.
Surgery
Surgery is generally avoided in EDS due to poor tissue integrity and higher complication rates. In rare cases, surgery may be required for severe instability or life-threatening complications, with careful multidisciplinary planning.
Prognosis & Return to Activity
Ehlers-Danlos Syndrome is a lifelong condition. While it cannot be cured, many people experience significant improvements in pain, stability and function with appropriate physiotherapy, education and lifestyle adjustments.
Complications
- Chronic pain and functional limitations.
- Recurrent joint injuries.
- Early onset osteoarthritis.
Preventing Recurrence
- Build joint stability through regular physiotherapy-guided strengthening.
- Avoid excessive stretching and high-impact activities.
- Use pacing strategies to prevent flare-ups.
When to See a Physio
- Recurrent joint dislocations or persistent joint pain.
- Difficulty managing daily activities due to instability or fatigue.
- For guidance on safe exercise and activity progression.