Ehlers-Danlos Syndromes (EDS)

Connective tissue acts as the body's support system. In people with EDS, genetic changes affect the structure and function of connective tissue, making it weaker or more elastic than normal.

There are 13 recognized types of EDS. The most common is hypermobile EDS (hEDS), which primarily affects the joints and musculoskeletal system.

Because connective tissue is found throughout the body, EDS can affect multiple body systems and lead to a wide range of symptoms. These symptoms vary widely but often include joint hypermobility, chronic pain, fatigue and skin changes.

While there is no cure for EDS, early diagnosis and treatment can help manage symptoms, improve function and reduce complications.

Symptoms depend on the type of EDS and can range from mild to severe.

Common symptoms include:

• Joint hypermobility (double-jointedness)
• Frequent joint sprains, subluxations or dislocations
• Joint pain and chronic musculoskeletal pain
• Fatigue
• Soft, stretchy or fragile skin
• Easy bruising
• Slow wound healing
• Chronic headaches or migraines
• Dizziness or lightheadedness when standing
• Digestive symptoms, such as bloating, constipation or abdominal pain

EDS is caused by inherited genetic changes that affect connective tissue.

Risk factors include:

• Family history of EDS
• Having a parent with an inherited form of EDS
• Certain genetic mutations linked to specific EDS types

Diagnosing EDS starts with a detailed review of your symptoms, medical history and family history. Depending on your symptoms, you may be evaluated by a primary care provider, geneticist, rheumatologist, neurologist or other specialist.

Your provider may use:

• A physical exam
• Joint hypermobility assessment, including the Beighton score
• Genetic testing for certain types of EDS
• Imaging studies when needed
• Evaluation for related conditions affecting the heart, nervous system or digestive system

Because EDS can affect multiple body systems, diagnosis may involve specialists from several areas of care.

There are 13 recognized types of EDS. Some of the most common include:

Hypermobile EDS (hEDS)

The most common form of EDS. Hypermobile EDS is characterized by joint hypermobility, joint instability, chronic pain and fatigue.

Classical EDS

Often affects the skin and joints. People with classical EDS may have highly stretchable skin, easy bruising and abnormal scarring.

Vascular EDS

A rare but serious type of EDS that affects blood vessels and internal organs, increasing the risk of complications.

Other EDS Types

Less common forms of EDS can affect connective tissue in different ways and may require specialized genetic testing for diagnosis.

Treatment

There is no cure for EDS, but treatment can help manage symptoms, improve mobility and reduce the risk of injury.

Your treatment plan may include:

• Physical therapy to improve strength, stability and joint support
• Exercise programs focused on safe movement and conditioning
• Pain management strategies
• Braces or other supportive devices to protect unstable joints
• Treatment for headaches and migraines
• Care for digestive, cardiovascular or neurological symptoms
• Surgical treatment when appropriate for specific complications or injuries

Treatment is often focused on helping patients stay active, protect their joints and maintain their quality of life.

Talk with a healthcare provider if you experience:

• Frequent joint sprains, dislocations or instability
• Ongoing joint or muscle pain
• Unexplained fatigue
• Chronic headaches or migraines
• Skin that bruises easily or heals slowly
• Symptoms that interfere with daily activities
• A family history of EDS

Early evaluation can help identify EDS and rule out other conditions with similar symptoms.

The UC Gardner Neuroscience Institute is often a starting point for patients with Ehlers-Danlos syndromes who experience neurological symptoms such as chronic headaches, migraines, dizziness, nerve pain or concerns related to spinal instability.

Because EDS can affect multiple body systems, patients have access to specialists across UC Health, including experts in:

• Neurology and headache medicine
• Neurosurgery
• Physical medicine and rehabilitation (PM&R)
• Orthopaedics and sports medicine
• Genetics
• Cardiology
• Gastroenterology
• Primary care

Together, these specialists help evaluate and manage the wide range of symptoms and related conditions that may occur with EDS. Schedule an appointment with a UC Health specialist to discuss your symptoms and treatment options.