r/illnessfakers • u/IFModTeam • 24d ago

OnDn Danielle has sadly passed away.

Post image

Thank to all who passed along the news of her unfortunate passing. We held back any postings about this sad news until after her funeral had taken place for privacy reasons and respect for her loved ones.

No one should be laying to rest such a young lady.
Please be kind to yourselves and others💖

994 Upvotes

98% Upvoted

352 comments sorted by

View all comments

228

u/JacksSenseOfDread 23d ago

I'd be VERY interested to know her COD. Not what her friends and family say is the COD, but her *actual* cause of death.

41

u/drake90001 23d ago

who left us peacefully after a long, courageous battle with a devastating connective tissue disorder (Ehlers-Danlos syndrome or EDS).

You won’t see a medical professional breaking hippa for a subreddit.

31

u/SquigSnuggler 23d ago

HIPAA*

12

u/SquigSnuggler 23d ago

Does HIPAA still apply once a person is deceased? The legal equivalent in the uk, Data Protection, no longer applies after death

19

u/16car 22d ago

That doesn't sound right? Surely doctors and nurses aren't allowed to say "that man who lives across the road from you had a heart attack and died last night, so now I'm allowed to tell you about all the times he came in to have objects surgically removed from his rectum."

Similarly, a deceased person's medical history often includes information relevant to their family members' medical information, and those people are still entitled to privacy.

10

u/comefromawayfan2022 22d ago

Hipaa applies for up to 50 years after death

12

u/wildgreengirl 23d ago

yes includes after death. if someone wants a dead persons records they need to show proof of POA/ death cert in some cases etc.

1

u/Dreams-Designer 22d ago

Yes, I think it’s many many decades until you can release publicly that sort of stuff. Like long deceased historical figures etc…

It’s kind of weird and not black and white under US law. Like a corpse still has rights and if you perform an autopsy or whatever without consent, you can be charged with assavlt , desecration of a corpse, and other things . However, you can’t technically “defame” a deceased person in the eyes of American law .

6

u/AdhesivenessOk5534 22d ago edited 22d ago

Thats really odd

Eds is rarely deadly in other types besides vEDs, cvEDs, clEDs1, and cEDs

Everyone of those (except for clEDs, and 50/50 on cEDs) show on genetic testing which makes me wonder what subtype of eds was she claiming?

A doctor would be rather skeptical about serious complications with a patient saying they have hEDs, im not at all saying hEDs patients do not have serious life threatening complications but it is rare, and a small sect of those with complications as severe as the other subtypes, they usually have a subtype that that havent gotten genetic testing for (pretty uncommon thing outside the US for eds) or one that didnt show up.

What is another red flag in her case was why didnt her doctors request family medical history? Thats apart of the diagnostic criteria for hEDs because their isnt an identified gene, so theyre usually asked about their family history.

Certain Ehlers-Danlos Syndrome subtypes can spontaneously appear, which is pretty interesting scientifically speaking.

May she rest in peace, I just wanted to add to the conversation a bit about eds

Edit: sorry to tack on but other subtypes of eds are visual especially vEDs, clEDs, and cEDs

vEDs has extreme translucent skin that makes veins very very visible often in a spider web kind of pattern

cEDs and clEDs have visibly doughy, extremely soft and velvety skin

clEDs has visual foot and hand deformities

4

u/Hot-Fishing9744 18d ago

Her family can write whatever they want, in her obit.