Hypermobile Ehlers-Danlos Syndrome (hEDS)

Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue condition characterised by general joint hypermobility, chronic musculoskeletal pain and a wide range of whole-body features.

There is currently no single blood test or genetic test that can confirm hEDS. Diagnosis is based on a persons medical history, symptoms & clinical assessment, while other conditions with similar features may need to be ruled out.

How can hEDS affect the body?

hEDS can affect people in different ways and may involve multiple body systems.

Musculoskeletal

Common musculoskeletal features may include:

• Neck, back, hip, knee, hand or foot pain
• Joint instability or a feeling that a joint is “out of place”
• Joint clicking, grinding or stiffness
• Muscle tension or spasms
• Reduced strength & endurance
• Soft or unusually smooth skin
• Easy bruising
• Abnormal or widened scarring in some individual’s
• Delayed wound healing

Neurological

Some people with hEDS may experience:

• Fatigue
• “Brain fog” or difficulty concentrating
• Headaches
• Dizziness
• Balance difficulties
• Light or sound sensitivity
• Blurred vision

Gastrointestinal

Gastrointestinal symptoms can occur and may include:

• Digestion difficulties
• Constipation
• Nausea
• Bloating

Psychological

Some people with hEDS may experience:

• Anxiety
• Sleep difficulties
• Insomnia
• Irritability
• Low mood

How can Physiotherapy Help?

Physiotherapy can play an important role in managing hEDS and helping people improve strength, movement, confidence and day to day function. Treatment is individualized and may include:

• Strength & conditioning
• Movement retraining
• Hydrotherapy
• Clinical Pilates
• Cardiovascular exercise
• Manual therapy
• Bracing and support
• Education

Exercise with hEDS

Exercise should be tailored to the individual rather than avoided because of hypermobility. Your Physiotherapist may help you develop a gradual exercise program that considers your current strength, symptoms, fatigue and daily activities.

The goal isn’t to avoid movement, it is to find the right type, intensity and amount of movement for your body!