Chronic Health Conditions Discussion and Support

DeadLetterOffice

(1,352 posts)

2. Thanks RG.

Fri Apr 24, 2015, 08:29 PM

Apr 2015

I'm lucky -- I have good friends and an awesome spouse.
My primary care doc of 20 years doesn't know much about EDS but has agreed to learn all he can so he can case manage the healthcare for all three of us. And I have a good orthopedics doc that I trust. Monday I start looking for a physical therapist who's well-versed in connective tissue disorders.
It's all just a wee bit overwhelming, but I'm sure that will get better with time to adjust to it.

Have a great night.

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Newly diagnosed with Ehlers-Danlos Syndrome... [View all] DeadLetterOffice Apr 2015 OP

I really am sorry for you and your kids. RGinNJ Apr 2015 #1

Thanks RG. DeadLetterOffice Apr 2015 #2

I just read up about it. dixiegrrrrl Apr 2015 #3

We've got the hypermobility subtype. DeadLetterOffice Apr 2015 #4

I had never heard of that until recently when I learned.. 2theleft Apr 2015 #5

I hope the best for you and your kids... Holly_Hobby May 2015 #6

I saw a genetic counselor to diagnose. DeadLetterOffice May 2015 #7

Ok, that makes sense... Holly_Hobby May 2015 #8

Good luck! DeadLetterOffice May 2015 #9

They say a geneticist is the best person to diagnose. I actually did a lot of research on my own Seeinghope Jun 2016 #15

I have not heard of this but I am glad you got a diagnosis. DawgHouse Jun 2015 #10

It really is. DeadLetterOffice Jun 2015 #11

So sorry, DeadLetterOffice. pnwmom Aug 2015 #12

Try not to do the guilt trip DeadLetterOffice Aug 2015 #13

Thanks, DLO pnwmom Aug 2015 #14

I am glad that you finally got a diagnosis. For me it connected all of the dots. Seeinghope Jun 2016 #16

Connected all my dots, too! DeadLetterOffice Jul 2016 #19

The daughter of a friend of mine has one of the variants of this Nac Mac Feegle Jul 2016 #17

I'm sure you mean well. DeadLetterOffice Jul 2016 #18

I have no intention of being condescending. Nac Mac Feegle Jul 2016 #20

Amen. DeadLetterOffice Aug 2016 #24

my daughter's pcp thinks she has this. mopinko Aug 2016 #21

just got dx'd myself Paula Sims Aug 2016 #22

Hypermobile (type 3) DeadLetterOffice Aug 2016 #23