Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a hereditary connective tissue disorder, in which the collagen, the main structure of the body, is faulty.

There are different types of EDS:

  • Hypermobility (the most common & one I have)
  • Vascular
  • Classical
  • Hyphoscoliotic
  • Tenascin-X Deficient
  • Arthrochalasia
  • Dermatosparaxis
  • Kyphoscoliotic
  • Periodontal

EDS-Hypermobility Type is also commonly known as Hypermobility Syndrome (HMS). There is a difference of opinion as to whether these are the same condition, but the majority of medical professionals believe them to be one & the same. EDS is diagnosed by a rheumatologist. In all types other than Hypermobility, tests may be carried out to confirm diagnosis. There are currently no tests for EDS-Hypermobility Type so a detailed medical & family history is taken & patients are scored using the Beighton scale as to how over flexible certain joints are.

Symptoms of EDS-Hypermobility include:

  • chronic acute &/or persistent pain
  • fatigue
  • joint sublaxes
  • dislocations
  • poor proprioception
  • easily bruised
  • bladder problems
  • poor sleep pattern
  • stiff joints
  • stretchy, thin, velvety feeling skin

Failure to diagnose & misdiagnosis are unfortunately not uncommon, due to a lack of knowledge. Fibromyalgia & Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS) are often diagnosed in place of EDS-Hypermobility. It is worth noting here that it is entirely possible to have EDS & Fibromyalgia &/or ME.

Because the faulty collagen can affect any part of the body other conditions are common alongside EDS, including:

EDS is a chronic, life long condition for which there is no cure. Management is therefore key to achieving the best quality of life for the EDS individual. For those with Hypermobility Type this can include:

  • Physiotherapy
  • Hydrotherapy
  • Occupational Therapy
  • Pain Management
  • Pacing
  • The use of supports & mobility aids

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Useful resources –

Types Of EDS, What Is EDS? www.ehlers-danlos.org/about-eds/types-of-eds/. © Ehlers-Dalos Support UK 2004-2014.

Help & Advice, Help & Advice. www.hypermobility.org/help-advice/. Hypermobility Syndrome Association, Dr Alan Hakim, Claire Smith & Donna Wicks. Published May 2015.

What Is EDS, Help & Advice. www.hypermobility.org/help-advice/hypermobility-syndromes/what-is-eds/. Hypermobility Syndrome Association, Dr Alan Hakim. Published in HMSA newsletter; Nov. 2013, Online; Jan 2014.

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  • Gabrielle Trenbath

    Interesting post, I had never heard of the condition before

    • Really glad I was able to introduce you to EDS. Xx

  • I finally got diagnosed with EDS and POTS last year and it’s incredible how much my life has changed! I’m so inspired by all your posts about your illnesses and how well you talk about them. I might start writing some posts about my conditions too as it may help friends and family members understand what I’m going through! Kerrie xxxx

    • I’m so glad things have changed in a positive way as a result of your diagnosis. It really makes all the difference when we’re taken seriously & given the support we need. Aww!!! Thank you so much, I’m so glad I could inspire you. I’ve made so many friends with chronic illnesses through blogging so would highly recommend doing it. Xx

      • Yes it definitely does! Aw I didn’t realise how many people I was following that had similar conditions to me, it’s been really good reading about everyone’s experiences! Xxx

        • Before I started blogging, I didn’t know anyone else with a chronic illness. The support I’ve received from people I’ve made friends with has been overwhelming. Xx