EDS Awareness

EDS: A group of connective tissue disorders that can be inherited, and are varied both in how they affect the body and in their genetic causes. The Ehlers-Danlos Syndromes are currently classified into 13 subtypes, with each subtype having a set of clinical criteria for a diagnosis. For more detailed information please visit > What is EDS

Even though I got a 1st class golden ticket to an emotional roller-coaster with my diagnosis of EDS, one of my main missions now has become trying to bring awareness to this rare condition.

Don’t get me wrong as I’m not saying that everybody out there still chasing a diagnosis has EDS, but based on what I know from my own experience, there would be a percentage of people who would have it.

As I’ve already established through some of my other blog posts – my diagnosis took 14 years and I don’t want anybody else having to go through the same nightmare.

Most of the “medical experts” out there tend not to think outside the square when looking for a diagnosis, so if you don’t have what they initially thought you had – they dismiss it and throw you in the too hard basket.

The general practitioners (GP’s), who is our first go-to person when we’re feeling unwell, or who refers us to the specialists, never seems to think/consider EDS, or any other uncommon condition/illness, and that is so very, VERY wrong on many different levels.

A prime example of this would be my GP of 9 years never considering EDS with my symptoms, but when I spoke to him about it in 2018, when I first found out about it, he told me he’d always had a feeling I was hypermobile.

Umm, so why the fuck didn’t you bring it up with me earlier?

On top of that, I recently found out that he’d also been advised by an RSD specialist back in 2012 to consider a Rheumatologist for a possible connective tissue disorder, but still did jack shit about it! 🤬 

And what about all of the neurologists I got sent to over the years for suspected MS???

They were all blown away with the amount of arthritis that kept showing up on the scans, and even intrigued with the strange symptoms I was getting, but none of them ever thought to investigate it any further to try and find an answer.

Why???

Because I was a patient who was way too complicated and they couldn’t be bothered, which is not only unfair but frign unacceptable!

Now, even though I could be wrong [?] my theory is if I can shove EDS as a rare condition in everybody’s faces, many more people will start to become aware of it and mention it to their doctors – and then, hopefully >

  • it’ll be considered more often as an option to explore?
  • GP’s will educate themselves on EDS and other uncommon conditions/illnesses?
  • it will help to open up minds and stop the tunnel vision mentality?
  • help to consider a condition/illness/disease more frequently that’s not typically the norm?
  • stop them from giving up on patients?
  • stop the mental health bullshit > “it’s all in your head”, “it’s depression/anxiety”, “it’s psychosomatic”

Regardless of whatever medical conditions we may have, we need to stop getting dismissed so often, and to be taken much more seriously by the so-called medical professionals!

Hugs / Peace Out! Essie ❣