Living with Ehlers Danlos awareness
Informed by recognized medical guidance
Overview
Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect the body's connective tissue. Connective tissue is like the 'glue' that holds the body together — it supports the skin, joints, blood vessels, and organs. In people with EDS, this tissue is faulty, which can make joints very flexible (double-jointed), skin stretchy, and tissues fragile.
Key facts
- EDS is a group of conditions, not just one, and each type has its own features.
- Most types are caused by a change in a gene that affects collagen, a main building block of connective tissue.
- There is no cure, but symptoms can often be managed with support and lifestyle adjustments.
EDS is considered rare. The most common type, hypermobile EDS, affects about 1 in 3,000 to 1 in 5,000 people, but other types are much rarer.
EDS affects all sexes, ages, and ethnic groups. It is often first noticed in childhood, but some people only get symptoms later in life.
Symptoms
- Sudden tearing pain in the chest or back, or sudden shortness of breath — could be a sign of a ruptured blood vessel
- Sudden severe abdominal pain or a bulging area in the belly
- Sudden loss of vision or severe headache — could point to bleeding in the head
- A joint that is severely deformed, very swollen, or cannot be moved — especially after an injury
- ⚠Any new or unusual joint dislocation
- ⚠A wound that won't stop bleeding after pressure for 10 minutes
- ⚠Signs of a deep cut or tear that may need stitches
- ⚠A fever with a painful, red, or warm joint — could be a joint infection
- ⚠Sudden weakness, numbness, or tingling in an arm or leg
Common symptoms
- Very loose, flexible joints (hypermobility) that may dislocate or slip
- Stretchy, velvety skin that bruises easily
- Frequent joint pain and tiredness
- Slow or poor wound healing and abnormal scarring
- Weak muscles and poor coordination
Symptoms in children
- Loose joints and frequent falls or clumsy movements
- Soft, stretchy skin that may tear easily
- Easy bruising or unexplained marks
- Digestive issues like constipation or reflux
- Fatigue after normal activities
Symptoms in older adults
- Joint pain and stiffness as wear-and-tear adds up
- More frequent joint dislocations or instability
- Skin that breaks or bruises easily
- Chronic pain and fatigue that affect daily life
- Early joint wear (osteoarthritis)
Causes
Main causes
- Most types of EDS are caused by changes in genes that help build collagen or process it.
- These gene changes can be passed down from a parent or happen spontaneously.
- Connective tissue becomes weaker, leading to the signs of EDS.
Risk factors
- A family history of EDS or similar symptoms
- Having a parent with a genetic change linked to EDS
- Some types are more common in females, but anyone can have it
When to see a doctor
See a doctor urgently if:
- Sudden severe pain in the chest, back, or belly
- Any major joint injury that prevents movement
- A wound that is deep, wide, or won't stop bleeding
Book a routine appointment if:
- Frequent joint pain, dislocations, or skin problems
- Concern that your child is unusually flexible or bruising easily
- A family history of EDS and you want to discuss genetic testing
Diagnosis
Doctors diagnose EDS by listening to your history, doing a physical exam, and checking for specific signs. They may use a set of criteria with points for joint flexibility, skin elasticity, and other symptoms. For some types, a genetic test can confirm the diagnosis.
Tests that may be done
- Physical exam of joints, skin, and posture
- Beighton scoring to measure joint flexibility
- Genetic testing (a blood or saliva sample) for certain types
- Echocardiogram or other imaging if heart or blood vessels are involved
- Urine tests or skin biopsy (a small sample of skin) for some rare types
What to expect at your appointment
Diagnosis can take time because symptoms are similar to other conditions. You may see several specialists, such as a rheumatologist (joint doctor), dermatologist (skin doctor), or geneticist (gene expert). A referral to a specialist clinic can make the process smoother.
Treatment
There is no cure for EDS, but a team approach can help you manage symptoms, protect your joints, and improve quality of life. Treatment is personal to you and focuses on reducing pain, preventing injury, and keeping you as active and independent as possible.
Self-care at home
- Learn to protect your joints: avoid locking them, and use extra supports when needed.
- Take rest breaks and pace your activities to avoid fatigue.
- Use pillows or cushions to support your body when sitting or sleeping.
- Protect your skin with sunscreen, gentle cleansers, and tape that removes without pulling.
- Work with a physiotherapist to build safe strength and stability.
Medical treatments
Medical care might include pain management strategies, physiotherapy and occupational therapy, braces or splints for unstable joints, and careful use of medicines to reduce pain or other symptoms. Always discuss any treatment with your doctor or specialist — do not start new medicines without professional advice.
When is surgery considered?
Surgery is usually avoided unless absolutely necessary, because tissues heal slowly and may stretch or tear again. If surgery is needed, a team with experience in EDS is important.
Living with this condition
Life with EDS can be unpredictable. Some days are easier than others. Setting a comfortable routine, using assistive aids, and listening to your body can help you stay active without pushing past your limits.
Lifestyle tips
- Build a support network of friends, family, and healthcare professionals.
- Learn relaxation techniques to manage stress, which can make symptoms worse.
- Keep a symptom diary to spot patterns and triggers.
- Adapt your home and workspace with ergonomic supports and aids.
- Plan ahead for bad days — have a self-care plan ready.
Diet and exercise
A balanced diet rich in protein, calcium, vitamin D, and plenty of fruits and vegetables supports tissue health. Gentle exercises such as swimming, cycling, or Pilates can build muscle without overstressing the joints. Always exercise under the guidance of a physiotherapist if possible.
Mental health and emotional wellbeing
Living with a chronic and often invisible condition can be stressful. Many people with EDS experience anxiety or depression. It is important to talk about your feelings and seek mental health support. Remember, your symptoms are real and you deserve support.
Prevention
EDS is genetic, so it cannot be prevented. But you can prevent some complications by managing your joint health, protecting your skin, and getting regular check-ups.
Vaccines
You can receive all standard vaccines. If you have any bleeding or fragile tissue concerns, let the vaccine provider know beforehand.
Screening programmes
If a family member has EDS, genetic counselling can help you understand your risk and options. Once a diagnosis is made, some types require regular heart or blood vessel checks.
Complications
If left untreated
- Frequent joint dislocations and chronic pain
- Skin wounds that heal poorly, with wider scars or scarring that doesn't improve
- Problems with blood vessels or organs in the more severe types
- Early arthritis in affected joints
- Reduced mobility and quality of life
Long-term outlook
Most people with EDS lead full and active lives, especially with the right support and self-care. Challenges can be managed, and research continues to improve understanding and care. Many people find that adapting their lifestyle makes a real difference.
Find support
External links open third-party websites. Ruqelo Health is not responsible for external content. Listing an organisation does not imply endorsement.
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.