Is it worth pursuing an EDS diagnosis?

Yes because it really does give you closure on what you have, but then it also does suck because then you go into the phase of googling everything about that disorder which then makes you a nervous wreck. That is what happened to me at least, but personally, get the diagnosis and check!! ❤️

I'm currently waiting for my results and I can't wait. Like others stated, I already know I have it but I also feel like I may have multiple types. Other wise I just need the diagnoses so the doctors will take me seriously.

I think the diagnosis is super helpful - it helps you get in to see specialists you many not be able to easily see otherwise - it helps with diagnosis of comorbidities that DO have treatments - it helps to direct treatment and medication plan - specialists and hospital staff are more likely to listen to what you are telling them and explore / test for “zebra” things, instead of running basic tests and chalking your symptoms up to mental health issues.

I have a diagnosis for Eds and multiple comorbitities and it doesn’t help much with treatments but it does help doctors take you seriousley

I think so. Of course, there’s not much treatment for it, but EDS effects enough things that we and our other doctors need to be aware of that it’s important to know about. It’s also helpful to know if you plan on having kids since it’s genetic!

Putting a name to our diseases has benefits: 1) Validates our pain 2) Guides (knowledgeable doctors) about treatment options 3) Puts a name to our disease so when we do talk to medical staff that don’t know about our disease, whatever we tell them can be looked up in their medical journals. Because it’s not unknown in the medical journals and online. They just have to dig for it and read about it.

the diagnosis doesn’t change that there’s very little known or that dr can do for us. but it is nice feeling like i finally know what’s going on in my body

I feel diagnosis is very important as we react quite badly to some medications and hospital staff should know that they could overextend joints handling you along with knowing surgery's may not heal well and were prone to infection along with it being your right to know this, good luck!

Hi there, I am also in the process of trying to get my hEDS diagnosis. I am already diagnosed with Hypovolemic POTS but because I live on an island there are no doctors here that can diagnose me. However I feel the need and the right to know what kind of condition I am suffering with and I believe you deserve that too. I know it's hard for a lot of us out there, but we got this. Keep fighting :)

I do think getting the official diagnosis was helpful. But after that I have been managing my symptoms on my own as much as possible, since it’s a lot of self care anyways.

Depends, there’s a lot more too it then people think so if you truly have it, it can be helpful so other doctors can link things to it considering there are many comorbidities. If you don’t have the gene for it and only have hEDS it may be a bit harder to get a diagnosis, but can be still be really helpful depending on how much it effects you!!💗

Yes and no. It’s helpful when looking into comorbidities, but overall treatment for it doesn’t change much and many providers either don’t believe that I have it, or they’re not knowledgeable on it

I'm currently pursuing a diagnosis. I know I have EDS but I want proof from a doctor to tell other people and to get accommodations, mobility aids etc. Adults who don't understand what I've been through and won't are shaming me for the way I adapt and take care of myself. But they are in charge. With a name proven correct, I'm hoping to get what I need