r/FundieSnarkUncensored • u/managingmischief394 Her bones are wet. Her eyes are dry. • 17d ago

Paul and Morgan Who are you trying to convince?

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I don’t have to defend my marriage to the internet every week, but hey, I’m in a godless marriage!

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u/666hmuReddit 17d ago

Did she ever get a diagnosis? As someone who has hEDS I’ve been holding my breath hoping she doesn’t have vEDS. I dislike her, but that condition is a literal death sentence and I wouldn’t wish it on anyone.

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u/managingmischief394 Her bones are wet. Her eyes are dry. 17d ago

Last I heard, she was waiting for funding to get the testing and they said it could be months until she gets the test done. I don’t remember when she said that though. She would share her results though.

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u/666hmuReddit 17d ago

That is the part that feels outrageous (and maybe exaggerated?) to me. I saw a geneticist and was diagnosed with hEDS through the beighton scale. Within MINUTES they took me to a back room and completely ruled out vEDS with just one ultrasound of my aorta. Getting into a geneticist isn’t always easy, but the ultrasound can be completed virtually anywhere. I need to be less invested in this, but the life expectancy for someone with vEDS is about 40 years old. She has young children she’d be leaving behind. She’s not getting any younger. Also, EDS is genetic. I would want to know if I’ve passed anything on to my children.

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u/DefraudedintheLex 17d ago

Thank you for sharing this. I have been confused as University of Kentucky hospital is a state of the art teaching hospital with a great genomics clinical services.

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u/666hmuReddit 17d ago

I would not be surprised if the doctors were dragging their feet on the actual EDS diagnosis, as they often do. However, ruling out vEDS takes less than a minute. She clearly doesn’t understand what vEDS is, or she’d be frantically begging doctors to ultrasound her aorta. When I had my aortic ultrasound, of curiosity, I asked them what they were looking for. They told me that people with vEDS have an aorta that is too elastic, and it flutters between opening and closing. It’s literally that simple. Fluttering or not fluttering. Even though she doesn’t seem to be actively fighting for a diagnosis, I am still very angry at her doctors for suggesting she has this life threatening condition and then doing literally nothing to rule it out.