😂

Yeah, they should leave those poor kids out of this! Everyone does stupid stuff when they're young, sometimes it's drugs, sometimes it's helping a billionaire with a coup

I have so many beautiful blank notebooks and duplicates of a few of my favorites. I’m happy to know I’m not the only one.

Sorry. I didn’t finish that reply.
I keep searching but most docs don’t list if they treat EDS. Plus, I have Medicaid so the best specialists are typically out of reach for me. I can’t afford self pay.

Yes, please! I do! Preferably one who treats EDS patients or, at the very least, understands the complications & comorbid conditions that come with it.
I keep searching (Dys International list had son go to another gaslighter who also did zero postural tests).

Most docs have no understanding of EDS either and I’ve found that to be very dangerous for me at most appointments.
The neuro supposedly treats autonomic disorders but it seems his ego is threatened by anyone knowledgeable.

I have 1st appt w/ neuro tomorrow & his reviews are atrocious. Dismissive gaslighting, psychologizing autonomic sxs, yelling at educated pts who self advocate…I’m dreading it. I would appreciate any tips you might have on handling both docs. Thank you in advance.

My electrocardiologist just gaslit me in appt note saying he sees no reason for tachy other than weight, anxiety & adhd meds(which oddly help regulate my HR).He’s done ZERO postural tests & anxiety he saw was bc he laughed @ my concern over correct sutures for loop recorder in EDS pts. 1/2

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This is going to help a lot of people. 🥰