Ehlers-Danlos Syndrome (EDS) is a hereditary connective tissue disorder, in which the collagen, the main structure of the body, is faulty.
*Please note that new criteria, classifications and terminology has been implemented for the Ehlers-Danlos syndromes. This is outlined in the 2017 nosology, which can be found at ehlers-danlos.com. The information below will be updated as soon as I am well enough to do so.
There are different types of EDS:
- Hypermobility (the most common and the type I have)
- Tenascin-X Deficient
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
- joint sublaxes
- 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:
- troublesome migraine (for me this is in the form of Basilar Type)
- PoTS & other forms of dysautonomia
- TMJ Dysfunction
- Chiari Malformation
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:
- Occupational Therapy
- Pain Management
- 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.