So, what is Ehlers-Danlos Syndrome?
Well, without getting too technical, Ehlers-Danlos Syndrome, or EDS for short, is an inherited condition that affects the collagen in the connective tissue which is responsible for the structuring and support of internal organs, blood vessels, tendons, ligaments, bones, and skin.
In a nutshell – EDS is a rare disease where our collagen production is “genetically broken”, which in turn makes our connective tissues weaker.
The Ehlers-Danlos Syndrome label isn’t just a “one name fits all” [that would just be too easy] and as of 2017 – there are now 13 subtypes >>>
Each EDS subtype, excluding hEDS (aka Ehlers-Danlos Syndrome Type III or Hypermobile EDS), follows strict diagnostic criteria which will generally include genetic testing.
With the hEDS subtype, the genetic basis is still unknown so a diagnosis can only be established from a very strict and complex diagnostic criteria checklist which includes;
- Beighton Scale/Score
- Family History
- Medical History
- Exclusion of other heritable/acquired connective tissue disorders
- Exclusion of alternative diagnoses
There is no cure for Ehlers-Danlos Syndrome, but treatment can help manage the symptoms, which vary from one person to the next, to prevent further complications. Check out the FAQ page for further info on EDS.
I hope that my ‘layman’s term’ explanation of Ehlers-Danlos Syndrome has been easy to understand [?] as I know from my own personal experience that it can be quite complicated, and a “tad” daunting when first trying to learn about this shitty disease/syndrome/condition.
Oh and before I sign off! I just want to give a shout out to the official EDS website for providing the very helpful and informative EDS sub-type list as I really wasn’t looking forward to typing all that complicated jargon! Thank you! ☺
Hugs / Peace Out! Essie ❣