Ehlers-Danlos Syndromes and Hypermobility

A group of inherited conditions that affect connective tissue, the body’s ’glue’. The common form, hypermobile EDS, means very bendy joints that can hurt, slip out of place and tire you out. Rarer types affect skin and blood vessels.

Quick answer: Ehlers-Danlos syndromes (EDS) are 13 inherited connective tissue conditions. Hypermobile EDS (hEDS) is by far the most common: loose, painful joints, easy bruising and soft skin. It’s diagnosed with the 2017 criteria, as there’s no gene test. Hypermobility spectrum disorder is similar. Physiotherapy-led strengthening is the mainstay; vascular EDS needs specialist care.

What it is. The 2017 international classification lists 13 types of EDS. Hypermobile EDS (hEDS) makes up most cases. The rare types include classical EDS (very stretchy, fragile skin and wide scars) and vascular EDS (thin, fragile arteries and organs). Hypermobility spectrum disorder (HSD) is the label for people with symptomatic bendy joints who don’t meet the hEDS criteria; it isn’t a milder or less real condition, and care is the same.

How common. Rare types are genuinely rare: vascular EDS affects roughly 1 in 50,000 to 1 in 200,000 people. hEDS and HSD are much commoner. A Welsh health records study found about 1 in 500 people had a diagnosis of EDS or HSD, and many more are thought to be undiagnosed. Women are diagnosed more often.

Causes. Most types come from changes in genes that build collagen or related proteins, and many are inherited from one parent (a 50% chance of passing it on). The gene behind hEDS hasn’t been found, which is why there’s no blood test for it. Vascular EDS is caused by changes in the COL3A1 gene.

Symptoms. Joints that bend beyond the normal range, with pain, clicking, sprains, partial dislocations (subluxations) or dislocations. Soft, velvety or slightly stretchy skin, easy bruising, slow healing and stretch marks. Fatigue is common. Many people also have dizziness and a fast heart rate on standing (POTS), gut symptoms such as reflux and constipation, bladder problems, anxiety, and mast cell-type reactions, though how these are linked isn’t fully understood.

Vascular EDS clues. Thin, see-through skin with visible veins, extensive bruising, a characteristic thin face, and a family history of early arterial tears, bowel rupture or sudden death. It needs genetic testing and specialist care.

How it’s diagnosed. hEDS uses the 2017 criteria. All three are needed: (1) generalised joint hypermobility, measured with the 9-point Beighton score (5 or more in adults up to 50, 6 or more before puberty, 4 or more over 50); (2) at least two of: a set of body features such as soft skin, stretch marks, hernias or a long arm span, a parent, child or sibling with hEDS, or musculoskeletal complications such as daily limb pain for 3 months or more or recurrent dislocations; and (3) other causes ruled out, including other connective tissue and autoimmune conditions. The other types are confirmed with genetic tests. The Ehlers-Danlos Society is reviewing the 2017 criteria, with recommendations expected from late 2026.

What helps

There’s no cure. Strength, pacing and protecting joints help most people; treat each symptom on its merits.

1. Step 1 · Self-careUnderstand it and pace yourselfLearn which movements and positions strain your joints, plan rest around activity and build up slowly rather than boom-and-bust.

   Works

   Helps people manage symptoms; no large trials

   Access

   Free

   Watch for

   Avoid long periods of complete rest, which weakens the muscles that protect joints.

2. Step 2 · Allied healthPhysiotherapy: strength and joint controlGradual strengthening, balance and proprioception (joint-position) training, ideally with a physio who knows hypermobility. Occupational therapy for splints, aids and home set-up.

   Works

   Small trials show less pain and better function with exercise therapy; the mainstay of care

   Access

   GP chronic disease plan for some Medicare-subsidised visits

   Watch for

   Avoid pushing joints to their end of range; ’more stretching’ isn’t the goal.

3. Step 3 · GPTreat linked problemsPain plans that avoid relying on strong opioids, help with sleep and fatigue, and treatment for POTS, reflux, constipation or anxiety where present.

   Works

   Depends on the problem; treating each one helps quality of life

   Access

   GP, with specialists as needed

   Watch for

   Some people bruise easily: tell your doctor before procedures.

4. Step 4 · SpecialistGenetics, rheumatology or vascular careGenetic testing if a rarer type is suspected. Vascular EDS needs regular artery imaging, blood pressure control and an emergency plan.

   Works

   Essential for vascular EDS

   Access

   Public or private referral

   Watch for

   Surgery on joints is approached with caution; healing can be slower.

Results are typical figures from trials, not promises. Your specialist will tailor treatment to you.

Save your money

Popular, heavily marketed or often asked about, but the evidence is weak or says no.

• Collagen supplementsSwallowed collagen is digested like any protein. There’s no evidence it fixes faulty collagen or improves EDS.
• Online ’EDS diets’ and expensive supplement stacksNo good evidence they change the condition. A dietitian can help with gut symptoms.

Living with it

• Keep a daily, gentle strength routine; little and often beats occasional big sessions.
• Use good technique for lifting and avoid ’party tricks’ with your joints.
• Tell dentists, anaesthetists and surgeons; local anaesthetic sometimes works less well in hEDS.
• Plan pregnancy with your doctors, especially with vascular EDS.
• Support groups such as the Ehlers-Danlos Society help with information and connection.

See your GP if

• Joint pain, sprains or dislocations keep happening
• You’re very bendy and also have widespread pain, fatigue or dizziness on standing
• A close relative has EDS or died suddenly young from an artery or bowel problem
• Your child bruises very easily or has very stretchy skin (other causes need checking too)

Get urgent help for sudden severe chest, back, tummy or head pain, sudden weakness or vision loss, or coughing or vomiting blood, especially with known or suspected vascular EDS: call 000 (Australia) or your local emergency number.

Outlook. hEDS and HSD don’t shorten life, though pain and fatigue can be hard to live with; many people improve with the right exercise and support. Vascular EDS carries serious risks and shortens average life span, which is why early diagnosis and a care plan matter. Ehlers-Danlos Syndromes Awareness Month is in May: see our health days calendar.

Evidence and more information

• Malfait et al, 2017: The 2017 international classification of the Ehlers-Danlos syndromes
• The Ehlers-Danlos Society: hEDS diagnostic criteria checklist
• The Ehlers-Danlos Society: refining the 2017 diagnostic criteria
• Demmler et al, BMJ Open 2019: Diagnosed prevalence of EDS and HSD in Wales
• NHS: Ehlers-Danlos syndromes

Updated 8 November 2026. General education, not personal medical advice. Treatment depends on your situation, so talk to your GP or specialist.

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