EDS Awareness

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EDS: A group of connective tissue disorders that can be inherited, and are varied both in how they affect 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 when I got my diagnosis of EDS (Ehlers-Danlos Syndrome Type III / Hypermobile) my main mission now has become trying to bring awareness to this rare condition, and to try and help others.

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

I be like …

As I’ve already established through some of my other blog posts – my diagnosis was 14+ years in the making and I had to go through hell and back to finally get the answers.

I know for a fact that there would be 100’s, if not 1000’s, of people out there who are still trying to get answers, and even though they may not specifically have EDS, by bringing awareness to this rare condition may start to open some doors to stop this from happening to them?

What I mean by this is that 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 – the majority will automatically wipe their hands and throw you into a too hard basket.

Most of the general practitioners (GP’s), which are our first go-to person when we’re unwell, or who refers us to the specialists, never seems to think about EDS, or any other uncommon condition/illness, and that to me is just so very wrong on so many levels.

A prime example of this would be > my GP of nearly 9 years never once thought to explore EDS, even with all of my symptoms, but when I spoke to him about it in 2018 (when I’d first heard about it) his response was that he’d always thought that I was hypermobile.

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

Then on top of that, and like I mention in my MS blog post, he’d also been advised by the RSD specialist back in 2012 to consider a Rheumatologist for a possible connective tissue disorder, but he still did nothing about it. Why??? Because his mindset would of been >

  • There’s no way she’d have EDS as it’s as rare as rocking horse shit
  • I’ve never come across it in all of my years being a GP so it’s not that
  • There’s no-one I can send her to for a diagnosis anyways
  • It’s usually picked up as a child and she’s pushing 50

Well guess what asshole!?! You’re WRONG!

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 they were seeing on the scans – AND even intrigued with all of the other weird and strange symptoms that I was getting, but not one of them ever thought to investigate it any further to try and find the answers.

Why???

Because this patient is way too complicated for me and even though there’s definitely some kick-ass shit going on with her body based on her scan results, I’m just gonna stick to getting paid a fuck-load of money for only doing the easy and cut/dry diagnoses.

Plain & simple – It’s unfair AND unacceptable!

So now I’m on a hell-bent mission (yes another one, LOL) to try and change it for anyone who’s still out there trying to get the answers – or for anyone who will have to go through the same thing in the future just because of tunnel vision.

How am I going to achieve it??? I have no frign idea??? 😕

I can’t exactly write to every GP and specialist in Australia (and the world) with my story as an example so they become more open-minded when it comes to their patients, so the next best thing is to try and somehow ? bring the awareness through social media.

Initially this blog was set up as an emotional outlet for me, and still very much is, but because I can’t think of any other way to bring awareness to ‘opening up narrow minds when diagnosing’ – this blog is going to have to be the stepping stone for now until I can think of something else.

Clearly I’m still trying to learn the ropes whilst navigating myself through the ins-and-outs of having a new blog (which I talked about in a separate Blogging post) and even though some days it can still be extremely frustrating with having no idea what I’m doing >

It makes me more determined to get it right if it helps with getting the message out there!

Even though I may be wrong (?) my theory is if I can shove EDS as a rare condition in everybody’s faces, more and more people will start to become aware of it and hopefully mention it to their doctors and then, fingers and toes crossed >

  • it will be considered more often as an option to explore?
  • they will educate themselves more on EDS and other uncommon conditions/illnesses?
  • it will help to open up their minds and stop the tunnel vision mentality?
  • they’ll consider a condition/illness/disease more frequently that’s not typically the norm?
  • stop them from giving up on patients?
  • stop with the mental health bullshit > ‘it’s all in your head, it’s depression/anxiety or psychosomatic’ just because they can’t be bothered doing their jobs properly.

Off the top of my head I really don’t know the best way to be doing it ? but there has to be a way to change attitudes so people don’t have to go through hell and back to get believed, and/or get answers or diagnosis!!!

All I know right now is that I’m 100% committed to doing everything in my power to try and find a solution, and even though I’ll probably achieve jack shit with trying to change the mentalities, I’m still gonna give it a good go!

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

Stay strong!

Hugs / Peace Out! Essie ❣