Ehlers Danlos awareness
Informed by recognized medical guidance
Overview
Ehlers-Danlos syndrome (EDS) is a group of inherited conditions that affect connective tissue — the 'glue' that supports your skin, joints, blood vessels, and organs. Because connective tissue is unusually stretchy or fragile, people with EDS often have very flexible joints, stretchy skin, and easy bruising. There are several types, with different levels of severity.
Key facts
- EDS is a genetic condition caused by changes in collagen, a key building block of connective tissue.
- There are at least 13 types of EDS; the most common is hypermobile EDS.
- There is no cure, but treatments and support can help manage symptoms and prevent complications.
EDS is considered rare, but it is not extremely rare. Some studies suggest it affects about 1 in 5,000 people. Many people go undiagnosed for years, so the true number may be higher.
EDS can affect anyone, any age, and any ethnic background. It is seen more often in people assigned female at birth, and symptoms may appear in childhood or later.
Symptoms
- Sudden, severe chest or abdominal pain — call your local emergency number immediately
- Sudden difficulty breathing or shortness of breath — call your local emergency number immediately
- Signs of a stroke, such as facial droop, weakness on one side, or trouble speaking — call your local emergency number immediately
- Sudden loss of vision — call your local emergency number immediately
- Severe bleeding from a wound that will not stop — call your local emergency number immediately
- ⚠A joint that is suddenly stuck out of place and will not move back — see a doctor today
- ⚠A large, painful bruise that appears without an obvious cause — get same-day care
- ⚠A deep or gaping wound that may need stitches — see a doctor today
- ⚠Redness, warmth, or fluids coming from a wound — this could be an infection and needs same-day care
Common symptoms
- Hypermobility — joints that move beyond their normal range
- Frequent joint dislocations or sprains
- Stretchy, smooth, or velvety skin that bruises easily
- Slow or poor wound healing and wide, thin scars
- Chronic pain, often in joints and muscles
- Fatigue and tiredness
Symptoms in children
- Being unusually 'double-jointed'
- Frequent falls or sprains
- Skin that splits easily or heals slowly
- Tiring quickly during play or sports
Symptoms in older adults
- Worsening joint pain and early signs of osteoarthritis
- Skin that becomes thinner and more fragile
- Fatigue and reduced mobility
- Balance problems because joints are unstable
Causes
Main causes
- Most types of EDS are inherited from a parent who carries the altered gene. The condition affects how your body makes collagen, a protein that gives strength to connective tissue.
- In rare cases, EDS can arise from a new genetic change in the person themselves, with no family history.
Risk factors
- A parent, brother, sister, or child with EDS
- A family history of unusual joint flexibility or fragile skin
When to see a doctor
See a doctor urgently if:
- Sudden, severe pain, especially in the chest or belly
- A joint that is swollen, blue, or cannot be moved back into place
- Signs of infection in a wound
- Sudden weakness or numbness on one side of the body
Book a routine appointment if:
- You or your child have very flexible joints and frequent sprains or dislocations
- Your skin bruises easily or scars unusually
- You have long-term joint pain or fatigue without a clear cause
Diagnosis
A doctor (often a rheumatologist, geneticist, or specialist) will ask about your medical and family history, examine your joints and skin, and use a scoring scale to check joint flexibility. Genetic testing can confirm some types of EDS.
Tests that may be done
- Physical examination using the Beighton score, which measures how easily your joints bend
- A review of your skin, scars, and bruising
- A genetic blood test to look for changes in certain genes
- Imaging (such as an MRI) if a joint problem or injury is suspected
What to expect at your appointment
The process may take time. You may be referred to a specialist team that includes a physiotherapist, an occupational therapist, and a pain specialist. There is no single test for all types of EDS, so an accurate diagnosis depends on careful clinical assessment.
Treatment
There is no cure for EDS, but treatment can make a big difference. The goal is to protect your joints, manage pain, prevent unnecessary injuries, and help you stay as active and independent as possible.
Self-care at home
- Use gentle, low-impact exercises such as swimming, cycling, or walking
- Rest and pace activities to avoid overloading your joints
- Learn safe ways to move, reach, and lift — a physiotherapist can help
- Use braces or supports around weak joints, as advised by your care team
- Keep cuts and wounds clean and covered; seek medical help if healing is poor
Medical treatments
Doctors may recommend pain relief or anti-inflammatory medicines for flares, but any medication should be prescribed individually. Physiotherapy, occupational therapy, and in some cases psychotherapy for pain management are often central to care. There are no specific medicines that 'fix' collagen, and treatment is tailored to your symptoms.
When is surgery considered?
Surgery is generally avoided unless absolutely necessary, because EDS tissues can be fragile and heal slowly. If you need surgery, your surgical team should know about your EDS ahead of time.
Living with this condition
Living with EDS means paying attention to your body. Plan your day so you do not overdo it, rest before you break down, and ask for help when needed. Keeping a diary of symptoms can help you and your care team spot patterns.
Lifestyle tips
- Stay active with gentle activities, and warm up before exercise
- Avoid contact sports, heavy lifting, or activities that force joints backward
- Protect your skin with sunscreen and dress warmly in cold weather
- Wear good footwear to protect your ankles
- Talk to your employer or school about adjustments if joint pain limits your work
Diet and exercise
Eat a balanced diet with enough protein and vitamin D to support your muscles and bones. Exercise is safe and helpful if you keep it gentle — swimming, stationary cycling, and pilates are good choices. Avoid anything that 'locks' or overstretches your joints.
Mental health and emotional wellbeing
Living with a chronic condition can make you feel anxious, frustrated, or low. Your feelings are valid. Talk to a counsellor or psychologist who understands chronic illness. If you ever have thoughts of harming yourself, call your local emergency number or a crisis helpline right away.
Prevention
Because EDS is genetic, you cannot prevent having the condition. However, you can reduce some complications — like dislocations, sprains, and skin wounds — by learning safe movement habits and working with a physiotherapist.
Vaccines
Stick to your usual vaccination schedule — it is safe and important. Tell your doctor or nurse about your EDS before any injection so they can give it in a way that is comfortable and safe for you.
Screening programmes
If someone in your family has EDS, you may want genetic counselling. This can help you understand your risk and what testing might be useful. Screening for related conditions (like eye or heart issues) depends on the EDS type and your doctor will advise accordingly.
Complications
If left untreated
- Recurrent joint dislocations, which can damage joints over time
- Chronic pain and fatigue that interfere with daily life
- Poor wound healing and increased risk of skin infections
- In some rare types of EDS, serious internal problems such as heart valve issues or organ rupture (especially in vascular EDS)
Long-term outlook
With the right support, most people with EDS live active and fulfilling lives. The outlook depends on the type of EDS you have, but understanding your condition and working closely with your healthcare team helps you manage symptoms and avoid many complications.
Find support
International organisations
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Always verify with your doctor
Health guidelines vary by country and region. The information in this article is based on international clinical guidelines but may not reflect the specific guidelines, medications, or practices in your country. Always discuss your health concerns with your own doctor or healthcare provider, and refer to your local national health guidelines where available.
Important notice This information is for educational purposes only. It does not replace professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider about your specific situation. If you are experiencing a medical emergency, call your local emergency services immediately.
Related conditions
Sources and guidance
This article is educational and is prepared with reference to recognized health information and clinical guidance sources where available. Specific source links may vary by topic.
Last updated: July 31, 2026
Educational note: This information is for education only and is not a diagnosis.
Use it to support, not replace, advice from a licensed clinician.
If symptoms are severe, worsening, or urgent, call your local emergency number or seek emergency care.