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Understanding Hypermobile Ehlers-Danlos Syndrome (hEDS)

Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos syndromes (EDS) are a group of 13 inherited conditions that affect the body's connective tissues. These tissues can be found all over the body, providing support to the bones, internal organs, blood vessels, ligaments, tendons and skin. All types of EDS are thankfully rare; this edition of the Jobskin® blog looks at hypermobile Ehlers-Danlos syndrome (hEDS), which is the most common type.

hEDS (along with vascular and classical EDS), usually occurs due to what is known as autosomal dominant inheritance. This is when the faulty gene that causes EDS is passed on to the child by one parent, creating a 50% risk that any of their children will develop the condition. Occasionally, the faulty gene is not inherited but spontaneously occurs in a person for the first time.

A person with EDS can only pass on EDS of the same type to their children and the condition's severity can vary greatly between members of the same family. The faulty gene makes connective tissue weaker than it should be.

Symptoms of hEDS vary widely in both occurrence and severity between different people but often include:

  • Hypermobility of the joints
  • Unstable and loose joints that are particularly prone to dislocation and pain 
  • Joints that produce a 'clicking' sound when in motion
  • A feeling of extreme fatigue
  • Easily bruised skin
  • Problems with digestion, including constipation and heartburn
  • Dizziness upon standing up, along with an increased heart rate
  • Issues with the internal organs, including prolapses 
  • Problems controlling the bladder referred to as 'stress incontinence'

There is currently no test that is able to confirm whether a person has hEDS or not; instead, the diagnosis is made based on physical examinations and the medical history of the person with the condition and their family.

Hypermobility of the joints is a common condition, with around 1 in 3 people affected. This means that, if a person does not have any other related symptoms, joint hypermobility is unlikely to be caused by EDS. If a GP suspects that a person has EDS, they will refer them to a rheumatologist or to a genetics service for a full assessment.

There is no specific treatment for people with hEDS but there are a number of ways to manage the condition, such as:

  • Advice from a physi­ot­he­rapist, who can teach exercises that help to strengthen joints, manage pain and avoid injury
  • Advice from an occupational therapist to help manage daily activities and recommend helpful equipment
  • Cognitive behavioural therapy (CBT) and counselling to help the person cope with pain
  • Wearing made to measure Sensory Dynamic Orthosis (SDO®) such as those crafted and supplied by Jobskin®

For support with hEDS, you can get in touch with:

  • Ehlers-Danlos Support UK. This is the UK's only charity supporting people with EDS. Call them on 0800 907 8518 or visit their website at https://­www.­ehlers-danlos.org/
  • Hypermobility Syndromes Association (HMSA). A charity supporting people with conditions that cause hypermobility, including EDS. Visit https://­www.­hypermobility.­org/ or call the helpline on 0333 011 6388
  • Ehlers-Danlos Society. A worldwide community the brings together individuals, health care professionals, caregivers and supporters. The organisation is dedicated to improving and saving the lives of people affected by EDS and other hypermobility spectrum disorders (HSD). You can find their website at https://­www.­ehlers-danlos.com or contact their UK helpline on 0800 4357 4337.