Ehlers-Danlos Syndromes (EDS)

Understanding Connective Tissue Disorders & Raising Awareness




🧬 What is EDS? 🧬


The Ehlers-Danlos syndromes (EDS) are a group of thirteen genetic connective tissue disorders affecting the body’s collagen — the protein that gives strength and structure to skin, joints, organs, and blood vessels.


When collagen is faulty, tissues become fragile, stretchy, or unstable, leading to a wide range of symptoms.



Common symptoms include:


  • Joint hypermobility (double-jointed / overly bendy joints)
  • Joint dislocations & subluxations
  • Chronic pain
  • Fatigue & weakness
  • Stretchy or soft skin
  • Easy bruising
  • Digestive problems
  • Dizziness, palpitations & autonomic symptoms
  • Thin or slow-healing scars




📋 The 13 Types of EDS 📋


EDS is not a single illness — it is a group of 13 distinct genetic conditions.

Each type is caused by a different gene mutation, meaning:


  • A child cannot inherit a different type than their parent
  • One type cannot turn into another
  • Having one type does not increase your risk of another
  • It is extremely rare to have more than one type


The recognised 13 types:


  1. Arthrochalasia EDS (aEDS)
  2. Brittle Cornea Syndrome (BCS)
  3. Cardiac Valvular EDS (cvEDS)
  4. Classical EDS (cEDS)
  5. Classical-like EDS (clEDS)
  6. Dermatosparaxis EDS (dEDS)
  7. Hypermobile EDS (hEDS)
  8. Kyphoscoliotic EDS (kEDS)
  9. Musculocontractural EDS (mcEDS)
  10. Myopathic EDS (mEDS)
  11. Periodontal EDS (pEDS)
  12. Spondylodysplastic EDS (spEDS)
  13. Vascular EDS (vEDS)





🤸‍♀️Hypermobile EDS (hEDS) & HSD


Hypermobile EDS is believed to be the most common type, though exact numbers are unknown.


Many people with hEDS or Hypermobility Spectrum Disorders (HSD) experience:


  • Widespread joint pain
  • Instability or frequent sprains
  • Fatigue
  • GI issues
  • Dizziness / tachycardia
  • Muscle weakness


The older term JHS (Joint Hypermobility Syndrome) is no longer used.


 

🩹 Classical EDS (cEDS) 🩹


Classical EDS is characterised by:


  • Very stretchy skin
  • Fragile skin that splits easily
  • Wide, sunken, “tissue-paper” scars
  • Joint hypermobility


Most people can now be diagnosed through genetic testing, usually of the COL5A1 or COL5A2 genes.


 

🧪 How is EDS Diagnosed? 🧪


Diagnosis may involve:


  • Clinical examination
  • Beighton hypermobility score
  • Medical history
  • Genetic testing (most types)
  • Skin biopsy (certain types)
  • Specialist referral (genetics, rheumatology, physiotherapy)


Diagnosis can take time due to overlap with other conditions.


 🖤 Managing & Living With EDS 🖤

There is no cure, but symptoms can be managed with the right support.



Helpful approaches include:


  • Physiotherapy (strengthening & stability)
  • Occupational therapy (pacing, aids, adaptations)
  • Pain management
  • Gentle exercise (Pilates, swimming, low-impact activities)
  • Joint supports & bracing
  • Mobility aids
  • GI support
  • Autonomic dysfunction management
  • Skin care & wound protection
  • Mental health support


Quality of life can improve significantly with the right management.


Genetics & Inheritance


Most types of EDS are autosomal dominant, meaning:


  • A parent with EDS has one altered gene
  • Each child has a 50% chance of inheriting it


Some types are recessive or can occur spontaneously in someone with no family history.


Living With EDS: Emotional & Social Impact


People living with EDS often face:


  • Chronic pain
  • Fatigue
  • Anxiety around injuries/dislocations
  • Difficulty being believed or understood
  • Long diagnostic journeys
  • Frustration navigating medical care


But the EDS community is strong, resilient, creative, and supportive.


Support in the UK


Useful services include:


  • EDS Support UK (support, information, community)
  • UK National EDS Diagnostic Service (Sheffield & London)
  • GP referrals for physiotherapy, pain management, GI care, cardiology, etc.