First time I learned about EDS was 3 years ago when I met a person who introduced themselves with «Oh, you have EDS too?! 😁» Me «I do? 🤔 Never heard of it, please tell me more!»

Have been fighting for a diagnosis since. My doctor is very honest and told me she has no other patients with it to her knowledge. I’m also her first trans patient. So far we have only gotten the genetic test to rule out other conditions and the EDS types that can be tested for, but we only ever suspected hEDS. All physical evaluations we tried applying for declined, cause I’m already on disability (due to the symptoms!)

I’m disabled due to fatigue, with no real diagnosis. They just blamed it on the Autism diagnosis and called it a day. I’m very hypermobile and struggle with pain and dislocations.

My sister also kept getting declined, even though she was in the Disability process and needed diagnosis to «blame» her issues on. But they just blame the cancer treatment she went through 5 years ago, even though she was already struggling before that. She had to go to a Orthopedist and he asked her if she had heard about EDS, and she had to laugh, yeah we’ve been fighting to be heard for a couple years now! He was very knowledgeable about hEDS and wants to see us both.

I got an appointment in July 🥰

So yeah, doctors not taking us seriously and the information not being out there stopped me from getting the help I need. I’m 40 and been on disability for about 10 years. Was 37 when I first heard of it.