If you stopped a person in the street and asked them if they knew what Ehlers-Danlos Syndrome was (not recommended) the chances of them saying yes are probably slim. It’s more likely they will tell you to go away or just blankly shake their head and walk on. EDS is confusing, especially for those who are suffering from associated problems and haven’t had a proper diagnosis. There are a lot of questions fired about online from people who are unsure if they have Hypermobility Syndrome or EDS, or if their other symptoms and problems could be EDS or be completely unrelated. It’s a confusing sea to swim through.
THE BASICS:
-EDS is an inherited group of conditions known as connective tissue disorders.
-It affects the collagen proteins in the body that act as a glue in the tendons, ligaments, skin, bone, cartilage, blood vessels, gut and spine.
-It is caused by genes with alterations. These alterations make the collagen weaker and sometimes reduce the amount in the body. These genes are faulty and can be inherited.
Some features from the different forms can cross over in certain people but separated they are:
Classical: Stretchy, soft and fragile skins that seems elastic and joints that are hypermobile and loose with extra flexibility.
Hypermobility: Joints are flexible and can cause pain, especially after physical activity. The skin in this case is basically normal but sufferers will bruise easily.
Vascular: The most severe form of EDS. Organs and blood vessels can burst.
Arthrochalasia: Joints can dislocate very easily, skin is soft and fragile and it can cause short stature.
Kyphoscoliotic: In childhood the spine is severely curved.
Periodontal: The same features as classical, but gums can also be fragile.
Dermatospraxis- This type of EDS is exceptionally rare and it is thought fewer than five people in the UK suffer from it. The skin is the affected organ, appearing wrinkly and doughy and will tend to sag.
Hypermobility syndrome and hypermobility type EDS are so alike in their features that they are often classed as the same by doctors and patients receive the same treatment. It is easy to become confused with terminology as professionals may use both terms interchangeably due to their similarities. There is no genetic test that can separate the two and give a confident diagnosis of one or other. This confusion can be frustrating and cause a lot of cases of brain ache and general head fuzziness, but things are slowly become clearer and more widely known in the medical community. It’s a good idea to take some time to do detailed research and tackle it calmly, or with a glass of wine/slab of chocolate, if that’s your thing. More detailed information on the differences is available on the Hypermobility Syndrome Association website at this link:
http://hypermobility.org/help-advice/hypermobility-syndromes/jhs-or-eds/
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