Anonymous #1 4w

I found that my PTs were able to help me determine if it was EDS and then could help me to deal with those symptoms. I only got a real diagnosis when I saw the genetic/eds specialist in the Special Care Clinic at CHCO once my symptoms became severe and massively affected my quality of life, and when I had other issues like needing a feeding tube for gastroparesis and other connective conditions that are under the EDS umbrella.

2

Anonymous #1 4w

Tysm for the response! I actually started my journey towards a diagnosis because of my PTs (ironically enough) due to some wrist and hand issues I’ve been dealing with. I’m hoping to talk to my parents again soon so hopefully we can figure it out. Thanks again for the quick response:)

1

Anonymous OP 4w

the criteria is pretty strict and hinges on you either having already had severe complications or having a family history, so look up the checklist before you attempt to get your diagnosis. if you’re not showing severe symptoms yet but have generalized joint hypermobility you’ll likely get an hsd diagnosis which is functionally the same in which help you’ll get like in PT, but won’t address any systemic complications you might have down the line if it’s heds.

1

Anonymous #2 4w

if your family isn’t willing to do any special appointments, i would try making a regular doctors appt, and using the beighton scale to just get “generalized joint hypermobility” in your chart to improve the quality of the Pt you receive

1

Anonymous #2 4w

Tho if you do the genetic testing before severe symptoms you will get a diagnosis. Cause they can’t deny symptoms AND DNA evidence. I am lucky that I got a student dr and the supervising dr basically just told him to put in the referral bc he “sends all women of childbearing age” with hypermobility

1

Anonymous #3 4w

Idk if it was a misogynistic thing or bc women get ignored and he’s trying to do the opposite? (That’s my optimistic take anyway)

1