Genetics Clinic ... Again

[Stretchygirl]

Hiya, I've just got my appointment through for my genetics appointment, it's on the 28th August. I've done a fair bit of reading about what happens during the appointment, I'm just wondering about people's experiences and whether they found it useful? Thanks, Kirsty x

[Hidden]

hi their not knowing what your facing may i say i hope all goes well for you don't understand what you going through but my thoughts are with you take care. bigalan x

[Stretchygirl in reply to Hidden]

Thank you😊x

[Hidden]

hi their will you let us know how you get on please will be thinking about you whilst you attend your appointment. bigalan

[Stretchygirl in reply to Hidden]

Hiya, yeah I will do😊

[Hidden in reply to Stretchygirl]

many thanks your to young to be suffering but aren't we all take care Stretchygirl speak to you again bigalan x

[Stretchygirl]

Just to update everyone, I have been diagnosed with HMS/EDS HT or whatever you want to call it. Just about sunk in finally, despite me knowing well before my appointment what she (my consultant) was going to say. Onwards now, to my new life with my new diagnosis. X

[Suzysheep]

It's good that you have got your diagnosis. You can be mindful now you know.

What happens now? Will you see anyone?

I got my diagnosis, and was basically then left to it!

Xx

[Stretchygirl in reply to Suzysheep]

It looks like thats what's going to happen tbh! The geneticist that I saw isn't seeing me again. And I'm still under my Rheumatologist, occupational therapist and Orthopaedics (soon to be back to physio), so I still have plenty of professionals around me!

I'm having surgery shortly, but I will have to see what comes after that and the rehabilitation is finished.

It's hard to put the shoe on the other foot and be the patient though I do have to say, I'm used to being the person that people come to for advise!

X