Hello! I'm Piper. I've been diagnosed with Elhers-Danlos Syndrome. Anyone else have this diagnosis? I'm currently looking for recommendations for a nice shoulder brace because my shoulder just won't stay the heck in, tips on living with EDS, info about EDS.... And why yes, I'd also love some sympathy. haha.
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Feel free to reply to any comment by clicking the "Reply" button.Ah, another zebra!
GreatNani
Level 8
Aug 14, 2019
0
Oooh! 3 zebras! We almost have a herd!
@PiperMckenna not formally diagnosed as I could not do the genetic testing. But yup! I am a zebra!
Hello I am also a zebra. I have Ehlers-danlos and dislocate basically whatever can dislocate.
I cannot recommend any shoulder supports but I do know of some good Facebook pages that offer great community and advice 
LadyAlyxandrea
Level 8
June 26, 2019
1
Ah, you know the snaps and pains and stretchiness! I'd love to join those FB pages. I'm just now "coming out" about having EDS. I don't know why, but I've been ashamed of it for years. I always felt like it wasn't a real diagnosis. And doctors being clueless didn't help. I finally found a doc that did test and was supportive and I don't feel crazy! Yay!! So yup. I'm okay with being a zebra now.
@PiperMckenna there are a lot of stigmas and misinformation even with doctors that really hinders EDS progress and knowledge. That is for sure.
It wasn't until last year that I'd even heard of it. I was always called a hypochondriac, klutz, attention seeking faker, etc but now I feel justified and vindicated with my diagnosis and the knowledge I have gained of just how powerful this disorder really is.
It most certainly isn't shameful at all, nor is it just crazy in your head. And you definitely aren't alone.
@LadyAlyxandrea This has been my experience too! I'm really happy that my family and 2 new doctors believe me and are sympathetic. It's really changed how I look at myself and treat myself! There were so many things about me I knew weren't normal, but I didn't know were symptoms of EDS. Now it makes so much more sense!
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