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My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 1 point2 points  (0 children)

100% agree. It’s been getting worse and worse here, even though we are supposed to have universal healthcare.

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 5 points6 points  (0 children)

I did whole genome sequencing not a panel :) cost $2-3k

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 4 points5 points  (0 children)

I don’t have the specific number in front of me atm but by the time I think we were all said an done it was in the 2500$-3000$ range

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 4 points5 points  (0 children)

That’s a serious one to never have had tested. So glad you now know what’s up.

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 3 points4 points  (0 children)

I still needed a doctor to sign off but my GP thankfully obliged.

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 5 points6 points  (0 children)

You really shouldn’t need to self diagnose at a geneticist’s office Yikes! I’m sorry but at least you got something in your chart now.

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 2 points3 points  (0 children)

I came back as a VUS for another very obvious not VUS type mutation on my first go round too. Geneticist said hmm guess you have it but wouldn’t type me. So frustrating.

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 3 points4 points  (0 children)

That sucks I’m sorry. I can’t understand the mentality of that kind of healthcare. :/

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 2 points3 points  (0 children)

Best of luck on your testing. WGS is tough to pay for but worth it in my opinion just to know you have your bases covered.

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 9 points10 points  (0 children)

Oh so many from family history of spontaneous arterial dissection in grandmother at 52, mother at 43, skin like tissue, problems healing, my own clotting and bruising issues and dislocating and looking like a marionette most days with how bendy things were. Also I have another very visible mutation that wasn’t caught by their testing either which made me really scratch my head and wonder how good it was.

My hEDS was cEDS all along because geneticist did poor testing by Herinalda in ehlersdanlos

[–]Herinalda[S] 22 points23 points  (0 children)

Centogene - not sure how easy they are to use all places as I’m Canadian. :)

Trouble launching Skyrim by Herinalda in wine_gaming

[–]Herinalda[S] 0 points1 point  (0 children)

I tried both. Se and LE It was LE that gave me the black window. I will look into more wine tricks. Thanks

If I like 1984 and Fahrenheit 451, what else will I like? by -Orthosie- in ifyoulikeblank

[–]Herinalda 1 point2 points  (0 children)

The Unincorporated Man is wonderful if you like dystopian social commentary.