Ehlers-Danlos Syndrome Overview and Management
know about the Ehlers-Danlos syndrome, causes, symptoms, how to manage it, diagnose and how to live with EDS.
Written by Dr. Siri Nallapu
Reviewed by Dr. Shaik Abdul Kalam MD (Physician)
Last updated on 20th Aug, 2025
Introduction
Ehlers-Danlos Syndrome (EDS) is a group of rare genetic disorders that affect the connective tissues in the body—primarily the skin, joints, and blood vessels. People with EDS often experience overly flexible joints, stretchy skin, and fragile tissues, which can lead to various health challenges. While there is no cure for EDS, proper management can significantly improve quality of life.
This article will help you understand EDS, its symptoms, causes, and practical ways to manage the condition effectively.
What is Ehlers-Danlos Syndrome (EDS)?
EDS is caused by defects in collagen, a protein that provides strength and elasticity to connective tissues. Since collagen is present throughout the body in skin, ligaments, blood vessels, and organs, EDS can affect multiple systems. There are 13 subtypes of EDS, with the most common being:
1. Hypermobile EDS (hEDS) – Causes joint hypermobility, chronic pain, and frequent dislocations.
2. Classical EDS (cEDS) – Leads to extremely stretchy, fragile skin and easy bruising.
3. Vascular EDS (vEDS) – The most severe type, affecting blood vessels and organs, increasing the risk of ruptures.
Each type has unique symptoms, but all share some degree of joint and skin involvement.
Common Symptoms of EDS
Symptoms vary depending on the type of EDS, but may include:
- Joint hypermobility – Joints move beyond the normal range, leading to frequent dislocations or sprains.
- Soft, stretchy skin – Skin may tear or bruise easily and heal slowly.
- Chronic pain – Muscle and joint pain due to instability.
- Fatigue – Many people with EDS experience extreme tiredness.
- Digestive issues – Such as irritable bowel syndrome (IBS).
- Cardiovascular problems – In some types, weak blood vessels can lead to complications.
If you notice these symptoms, especially if they run in your family, consult a doctor for evaluation.
What Causes EDS?
EDS is a genetic condition, meaning it is inherited from one or both parents. In some cases, a spontaneous gene mutation can also cause it. Since different genes are involved in collagen production, the specific mutation determines the type of EDS.
Who is at Risk?
It includes:
- People with a family history of EDS.
- Those with unexplained joint hypermobility or frequent injuries.
- Individuals with fragile skin or unusual scarring.
Genetic testing can help confirm a diagnosis, especially for rarer types like vascular EDS.
How is EDS Diagnosed?
Diagnosing EDS can be challenging because symptoms overlap with other conditions. Doctors use:
1. Medical history & physical exam – Checking joint flexibility, skin texture, and family history.
2. Genetic testing – To identify specific mutations (for some subtypes).
3. Imaging tests – Like echocardiograms for vascular EDS.
If you suspect EDS, a rheumatologist, geneticist, or connective tissue specialist can help with diagnosis.
Managing Ehlers-Danlos Syndrome
While there’s no cure, lifestyle changes, therapies, and medical support can help manage symptoms effectively.
1. Joint and Muscle Care
- Physical therapy – Strengthens muscles to stabilise joints and prevent injuries.
- Low-impact exercises – Swimming, Pilates, and walking are gentle on joints.
- Braces & supports – Help prevent dislocations during daily activities.
2. Skin Protection
- Use moisturisers to keep skin hydrated.
- Avoid harsh skincare products that may irritate fragile skin.
- Protect skin from injuries by wearing long sleeves or padding.
3. Pain Management
- Gentle stretching & massage – Helps reduce muscle tension.
- Heat/cold therapy – Eases joint and muscle pain.
- Medications – Pain relievers (as prescribed by a doctor).
4. Heart & Vascular Health (for vEDS)
- Regular heart check-ups and blood pressure monitoring.
- Avoid high-impact sports to prevent vessel ruptures.
5. Diet & Nutrition
- Stay hydrated – Supports skin and joint health.
- Collagen-supporting foods – Bone broth, vitamin C-rich fruits, and protein.
- Manage digestive issues – A balanced, fibre-rich diet helps with IBS symptoms.
6. Emotional & Mental Well-being
- Chronic pain and mobility issues can affect mental health.
- Support groups & counselling can provide emotional relief.
When to See a Doctor?
Seek medical attention if you experience:
- Sudden, severe pain (possible joint dislocation).
- Unexplained bruising or bleeding.
- Chest pain or shortness of breath (possible vascular complications).
If you suspect EDS, consult a specialist for proper diagnosis and management.
Living Well with EDS
EDS can be challenging, but with the right care, many people lead active, fulfilling lives. Key takeaways:
- Stay active but avoid overexertion.
- Protect your joints and skin.
- Follow a balanced diet.
- Seek medical support when needed.
If you need expert advice, consider booking a consultation with a rheumatologist or genetic specialist through Apollo 24|7 for personalised care.
Final Thoughts
Ehlers-Danlos Syndrome requires lifelong management, but with awareness and proper care, symptoms can be controlled effectively. If you or a loved one shows signs of EDS, don’t hesitate to seek medical guidance.
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