Ehlers Danlos Syndromes

Overview

Ehlers-Danlos syndromes (EDS) are a group of conditions that affect connective tissue. Connective tissue is the body's 'scaffolding' — the strong, flexible material that holds together your skin, joints, blood vessels and organs. In EDS, connective tissue is weaker or built differently than usual. This is often because of a problem with collagen, a tough rope-like protein that gives tissues their strength and stretch. Because connective tissue is everywhere, EDS can affect joints, skin, blood vessels, the gut and other body parts in different ways. There are several types of EDS, and each has its own pattern of symptoms and its own level of impact on daily life.

The most common type, hypermobile EDS, is thought to affect roughly 1 in 500 to 1 in 5,000 people, though it is often under-recognised. Some people have joint hypermobility without having EDS at all — being flexible is common and often harmless. The rarer types of EDS, including the type that affects blood vessels, are much less common.

EDS can affect anyone, at any age, and in any part of the world. Symptoms often first appear in childhood or the teenage years, but many people are only diagnosed as adults after years of unexplained joint pain, tiredness or injuries. Some types affect men and women equally, while hypermobile EDS is diagnosed more often in women, possibly because hormonal changes can make symptoms more noticeable. If a parent has EDS, there may be a chance of passing it on, so family history matters.

Symptoms

Common symptoms

• Joints that move further than usual (hypermobility), sometimes causing sprains or partial dislocations
• Joint pain that may be constant or come and go, often worse after activity or at the end of the day
• Clicking, cracking or 'giving way' feelings in joints
• Skin that stretches more than usual, is soft or velvety, and bruises easily
• Thin or wide scars that stretch over time
• Long-lasting tiredness that is not fixed by rest
• Dizziness or light-headedness when standing up quickly
• Headaches, including migraines
• Digestive problems such as heartburn, bloating, constipation or loose stools
• Pelvic or bladder symptoms, including needing to pass urine often
• Problems with sleep, concentration or memory ('brain fog')
• Anxiety and low mood, which are common alongside long-term pain

Symptoms in children

• Being very flexible, or 'double-jointed', compared with other children
• Frequent falls, bumps and bruises, or being described as clumsy
• Flat feet, or feet that roll inwards when walking
• Pain in the legs at night, sometimes called 'growing pains'
• Trouble with handwriting, holding pencils, or fine hand movements
• Getting tired quickly in PE or avoiding sports because of pain
• Poor posture, or a tendency to slump or lean on furniture
• Stomach problems such as reflux, constipation or fussy eating
• Delayed walking or other movement milestones in some children

Symptoms in older adults

• Early wear and tear in joints (osteoarthritis), especially knees, hips and hands
• Long-term pain and stiffness that may be put down to 'just ageing'
• More frequent joint slips or dislocations after minor movements
• Hernias, or pelvic organ prolapse
• Reduced muscle strength and a higher risk of falls
• Needing to pace activities and plan rest more carefully
• Symptoms that change with menopause or other hormonal shifts

Causes

Main causes

• Changes (variants) in genes that carry the instructions for making collagen and other connective tissue proteins
• These gene changes can be inherited from a parent, or can happen for the first time in a person with no family history
• Different types of EDS are linked to different genes, which is why the types vary so much in how they affect the body
• In hypermobile EDS, the exact gene or genes involved are still not known, and research is ongoing

Risk factors

• Having a parent, sibling or other close relative with EDS
• Being female — hypermobile EDS is diagnosed more often in women, and hormonal changes can affect symptoms
• Being naturally very flexible, although most flexible people do not have EDS
• Repeated joint injuries, which can make symptoms more noticeable but do not cause EDS

When to see a doctor

See a doctor urgently if:

• Sudden severe chest, back or abdominal pain, or any of the emergency warning signs listed above
• A joint that is stuck out of place or causing severe pain
• New weakness, numbness or loss of movement in a limb
• A hot, swollen joint with a fever
• Any new symptom during pregnancy if you have a type of EDS that affects blood vessels or organs

Book a routine appointment if:

• Joint pain or stiffness that keeps coming back, especially if it limits daily activities
• Joints that dislocate or partly dislocate more than once
• Very stretchy skin, unusual scarring, or bruising more easily than expected
• Long-lasting tiredness, dizziness on standing, or 'brain fog'
• Digestive or bladder symptoms that are ongoing
• A family member has been diagnosed with EDS and you are wondering about your own symptoms
• You are thinking about having a baby and want to discuss the chance of passing on a genetic condition

Diagnosis

There is no single simple test for EDS. A doctor will usually start by listening to your symptoms, asking about your joints, skin, injuries and family history, and examining you. They may use a scoring system that checks how far certain joints move (called the Beighton score) and look at your skin and scars. If a rarer type of EDS is suspected, you may be referred to a specialist such as a rheumatologist, a clinical geneticist, or another doctor with experience in connective tissue conditions. Diagnosis can take time, and some people see several doctors before their symptoms are fully understood — that is frustrating but common.

Tests that may be done

• A physical examination of your joints, skin, scars and posture
• A joint mobility check using a standard scoring system
• A detailed personal and family medical history
• Blood tests to rule out other conditions that can cause similar symptoms
• Genetic testing (a blood or saliva sample) — mainly used when a rarer type of EDS is suspected
• Heart and blood vessel checks, such as an ultrasound or scan, for types of EDS that can affect blood vessels
• Referral to a specialist clinic for a second opinion if needed

What to expect at your appointment

The process is usually a conversation and an examination first, not a long list of tests. If genetic testing is suggested, results can take several weeks or months. Write down your symptoms, injuries and family history before appointments, and take someone with you if it helps. Ask for explanations in plain words if anything is unclear. A diagnosis is not meant to label you — it is meant to open the door to the right support, and it can bring real relief for many people who have spent years not knowing why their body behaves as it does.

Treatment

There is no cure for EDS, but there is a lot that can help. Treatment focuses on managing symptoms, protecting your joints, building strength safely, and treating specific problems such as pain, digestive issues or dizziness as they arise. Because EDS affects people so differently, care is usually tailored to you, often with a team that may include your family doctor, a physiotherapist, a pain specialist, an occupational therapist and, for some types, a heart or genetics specialist.

Self-care at home

• Stay active in a gentle, steady way — regular movement keeps muscles strong and supports your joints
• Learn to pace yourself: break tasks into chunks and build in rest, rather than doing everything at once
• Avoid forcing joints into extreme stretches or 'party trick' positions, even if you can
• Build strength in the muscles around your joints, ideally with guidance from a physiotherapist
• Use supportive footwear and, if recommended, insoles or braces for particular joints
• Set up your desk, chair and sleep position to support good posture
• Keep well hydrated and eat regular balanced meals to support energy levels
• Try to keep a steady sleep routine, and mention sleep problems to your doctor
• Keep a simple symptom diary so you can spot patterns and share them at appointments

Medical treatments

Doctors and therapists can offer a range of approaches depending on your symptoms. These may include physiotherapy to strengthen muscles and improve joint control, occupational therapy to help with daily tasks and equipment, and specialist pain management that can include talking therapies, relaxation techniques and physical therapies. Digestive, bladder, sleep and dizziness symptoms can be assessed and managed individually. Some people are offered medication to help with pain or other specific symptoms — your doctor or pharmacist can explain the options, benefits and risks for your situation, and any medicine should only be started after a proper discussion with a qualified healthcare professional. Braces, splints and other supports are sometimes recommended, usually alongside exercises rather than instead of them.

When is surgery considered?

Surgery is not routine in EDS and is only considered for specific problems, such as a joint that keeps dislocating despite physiotherapy, a hernia, or another complication. Because connective tissue heals differently in EDS, surgeons and anaesthetists should be told about your diagnosis beforehand so they can plan your care carefully. Surgery is always a joint decision between you and your specialist team.

Living with this condition

Living with EDS often means learning your own patterns — what helps, what flares things up, and when to rest. Many people find that small changes add up: a supportive chair at work, a bag on wheels, a stool in the kitchen, or planning activities around good and bad days. It is fine to ask for adjustments at work or school. Building a steady routine with gentle movement, good sleep and realistic expectations usually works better than pushing through pain and then crashing.

Lifestyle tips

• Choose low-impact activities such as walking, swimming, cycling or Pilates-style exercise, and build up slowly
• Warm up before activity and cool down afterwards
• Avoid long periods in one position — take short movement breaks
• Use ergonomic tools and joint-friendly techniques for lifting, carrying and housework
• Keep a regular sleep schedule and a calm bedtime routine
• Manage stress where you can, since stress can make pain feel worse
• Ask about workplace or school adjustments, such as a better chair or extra time for tasks

Diet and exercise

There is no special EDS diet, and no food or supplement can fix the underlying condition. A balanced, varied diet with plenty of fibre and fluids can help with the digestive problems many people with EDS experience. If you have dizziness on standing, your doctor may discuss hydration and dietary changes with you — ask before making big changes. For exercise, the goal is strength and control rather than stretching. A physiotherapist with experience in hypermobility can design a programme that suits your joints, starting gently and progressing slowly. Consistency matters far more than intensity.

Mental health and emotional wellbeing

Long-term pain, tiredness and unpredictable symptoms can take a real toll on mood, confidence and relationships. Feeling anxious, frustrated or low is understandable and very common — it is not a sign of weakness. Talking therapies, peer support and simple relaxation practices can make a meaningful difference, and it is worth telling your doctor how you are feeling. If you ever have thoughts of harming yourself, please reach out for help immediately: contact your local emergency number or a crisis support line in your country, or tell someone you trust and ask them to stay with you.

Prevention

EDS cannot be prevented, because it is caused by gene changes present from birth. What you can do is reduce the chance of injury and joint damage: stay strong, pace yourself, avoid extreme stretching, and get symptoms checked early. If EDS runs in your family and you are planning a pregnancy, ask your doctor about referral to genetic counselling, where you can talk through the chances of passing it on and what your options are.

Screening programmes

There is no general population screening programme for EDS. When a family member is diagnosed, doctors may suggest checking close relatives for symptoms, and for some rarer types they may recommend regular heart and blood vessel checks. If you have a type of EDS that can affect blood vessels or organs, your specialist team will advise on how often you need monitoring and during pregnancy.

Complications

If left untreated

• Ongoing joint pain and early wear and tear (osteoarthritis) in some joints
• Repeated sprains, partial dislocations and dislocations
• Long-term tiredness, poor sleep and difficulty concentrating
• Digestive problems such as reflux and constipation becoming persistent
• Dizziness and falls, particularly in older adults
• Hernias or pelvic organ prolapse
• In rarer types, a higher risk of problems with blood vessels, heart valves or organs that need specialist monitoring
• Extra challenges during pregnancy for some types, which is why early planning with your maternity team matters
• Low mood, anxiety and social isolation linked to long-term symptoms

Long-term outlook

Most people with EDS live full, active and independent lives. The condition is lifelong, and symptoms can flare and settle over time, but understanding your body and getting the right support early makes a real difference. Many people find that with good physiotherapy, pacing and a team they trust, they can work, exercise, study and enjoy family life. Research into EDS is growing quickly, and awareness among healthcare professionals is improving — so if you feel unheard, it is reasonable to ask for a second opinion. You are not alone in this, and help is available.

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