How long did it take you to get diagnosed (from when you started seeking answers), and how old were you at the time of diagnosis?
@Catlily5
7 ай бұрын
Still not diagnosed. The geneticist said that I probably have EDS but he wouldn't diagnose me.
@ehlersdanlosandi
7 ай бұрын
@@Catlily5 that has to be frustrating.
@pamelaaban2625
7 ай бұрын
I'm 55, and I was just diagnosed 5 months ago. It probably took me 4 months or so to get my appointment. I've had life long issues, but no one, including myself, connected the dots. I first learned of EDS about 3 years ago.
@ehlersdanlosandi
7 ай бұрын
I'm sorry it took so long for the dots to be connected! I'm so glad you have answers now.
@shannongreenwell1278
7 ай бұрын
I have Classical EDS, and I have MANY friends ( including you) that have hEDS. I have POTS, MCAS and Migraines.
@ehlersdanlosandi
7 ай бұрын
Thanks for being my friend! I really appreciate your constant support!
@shannongreenwell1278
7 ай бұрын
@@ehlersdanlosandi you’re welcome, that’s what zebra 🦓 friends do!
@mariecasson7655
7 күн бұрын
I've had several problems for over 35 years in ,suffer neck sin swallowing, joint pain, and lots of pain. No diagnosis here in Britain. God help me. And all of us.
@ehlersdanlosandi
7 күн бұрын
@@mariecasson7655 I hope you can find some relief!
@susanoppat3138
7 ай бұрын
Excellent job!
@ehlersdanlosandi
7 ай бұрын
Thank you!
@DiariesofaDisabledmom
7 ай бұрын
I’m 37 and didn’t know I had heds until a few months ago. Guess I had some signs as a kid but not many and flexibility wasn’t one of them. How come my symptoms didn’t get worse til my 30s? Now trying to get stuff stabilized. Learned that the thing on my ankle may be atrophic scaring. Also no dislocations though some have popped out and back in so hard I’m surprised it didn’t dislocate. Ppl kept telling me all the popping was normal til it got so bad 🤦🏻♀️
@ehlersdanlosandi
7 ай бұрын
I've heard from a lot of viewers that their symptoms didn't really become bothersome until their 20's or 30's. I didn't realize something was truly wrong until I was about 22. My childhood seemed pretty normal with just a few symptoms I can recognize now in hindsight.
@bethanyspence4156
7 ай бұрын
I absolutely love this thorough and concise overview of eds! Thank you! I was blessed to only have to wait a couple of years from when I started seeking answers to when I was diagnosed with hEDS. I did however have to wait about a year for an appointment to be evaluated for hEDS, but at least now we have answers. I wanted to ask, when I was evaluated and diagnosed last month, the doctor who diagnosed me (she is on the medical board for the Ehlers Danlos Society) mentioned there are 14 types of eds. I had only ever heard of 13. Do you know of a 14th type, or did she perhaps misspeak?
@bethanyspence4156
7 ай бұрын
I will add, I was almost 32 at diagnosis.
@ehlersdanlosandi
7 ай бұрын
I'm assuming she was referring to an unclassified subtype of EDS (as in one without a name yet). I swear I remember hearing that there's at least one or two unclassified subtypes, but I couldn't find that info on the Ehlers-Danlos Society's website, which is where I get most of my info, so I didn't include that info. I'm sure she knows what she's talking about, especially being on the board!
Пікірлер: 18