Just knowing what I had felt so liberating

Posted December 16, 2019

I’m Gracie Anne, this is my experience of living with hEDS.

I was officially diagnosed at 13. I’ve had 5 surgeries in a two year time span, 13 hard casts and numerous braces. The number of dislocations is astronomical, the broken bones and torn ligaments were never ending. Doctors didn’t know what to do with me, they were always happy to give me a note saying I needed physical therapy or pain meds with no explanation. 

Finally we went to a specialist and I got diagnosed, even though she didn’t have anything to ”fix” the EDS, just knowing what I had was so liberating. I felt like I could finally breathe, and finding this community has been very helpful. Being able to see what other people do to cope with the pain, and seeing other people who understand completely what I go through every day is amazing. 

I’m now 17, and I do yoga to help with my pain. Thank you for this lovely community.

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