Ehlers-Danlos Syndromes

Last Updated: July 3, 2026

Key Points

Rare inherited conditions affecting connective tissue
Causes joint hypermobility and fragile skin
Severity varies from mild to disabling
Many types exist, hypermobile EDS is most common
No specific cure, but symptoms are managed

Overview

Ehlers-Danlos syndromes (EDS) are a group of rare, inherited conditions that affect connective tissue. Connective tissues are the body's 'glue,' providing support to skin, joints, tendons, ligaments, blood vessels, and internal organs. When these tissues are weaker than they should be, it can lead to a wide range of symptoms. EDS is caused by faulty genes that make connective tissue weaker. These faulty genes can be passed down from one or both parents, or sometimes a new genetic mutation can occur for the first time in an individual. There are 13 known types of EDS, each with varying symptoms and severity, from relatively mild to life-threatening. While there is no specific cure for EDS, many symptoms can be managed effectively. Treatment focuses on supporting affected body parts, managing pain, and preventing complications. A team of healthcare professionals often works together to provide comprehensive care.

Signs and Symptoms

Increased joint movement (hypermobility)
Loose, unstable joints that dislocate easily
Joint pain and clicking joints
Stretchy skin
Fragile skin that bruises or breaks easily
Slow-healing wounds leaving wide scars
Extreme tiredness (fatigue)
Digestive problems like heartburn or constipation
Dizziness and increased heart rate after standing
Problems with internal organs (e.g., mitral valve issues, organ prolapse)
Fragile blood vessels that can tear (in vascular EDS)
Curvature of the spine (kyphoscoliosis)

Things That Increase the Risk

Inherited genetic mutations
Faulty gene from one parent (autosomal dominant inheritance)
Faulty genes from both parents (autosomal recessive inheritance)
New genetic mutation occurring for the first time

Diagnosis

Review of medical history
Physical examination by a doctor
Referral to a joint specialist (rheumatologist)
Referral to a genetics service for assessment
Genetic blood tests (for certain EDS types)
Specialist EDS diagnostic service evaluation

Treatment & Management

Physiotherapy to strengthen joints and manage pain
Occupational therapy for daily activity support
Counselling or CBT for chronic pain management
Regular scans to monitor internal organs (for certain types)
Genetic counselling for understanding inheritance
Avoiding activities that strain joints or risk injury
Engaging in low-impact exercises like swimming or pilates
Learning energy conservation techniques for fatigue

Prevention

Early diagnosis for timely symptom management
Genetic counselling for family planning
Avoiding activities that put strain on joints
Protecting fragile skin and tissues from injury
Regular medical monitoring for potential complications

Available Treatments

Explore our range of treatment options for Ehlers-Danlos Syndromes: