Spoonie Jaquie Derailment Autism

[Yutyrannus]

I believe she had all of it going on.
Why? Because I have ehlers danlos syndrome, dysautonomia, gastropareses. I can still eat. And I have better and worse days. I have neurological problems. And I personally know others with very severe EDS.
EDS is a multi systemic disorder because the faulty connective tissue is everywhere. It can cause problems everywhere in the body, including organs, neurological problems, veins, mast cells, etc etc etc. Over 80% of the body has the connective tissue.
More and more get's discovered about the disease. Yes it can even cause seizure like episodes. And now it's becoming more known about the CCI/AAI instability in many eds patients that can cause this seizure like episodes with a normal EEG.
The problem with invisible illness is that it's invisible. Invisible makes it more hard to believe. And when it's a badly understood multi systemic illness then it's even harder to believe for many people, including doctors.
I have a really hard time to find doctor's to understand what is going on. It took me 33 years to be diagnosed. And even now doctors who understand what is going on are hard to find. It's not a search to get what I want to hear. No it's a search to get the help that I need for better quality of life. The judging is painful.
And what works for one person does not work as well for the other. So everyone is searching for their own way to feel as good as possible.

Jaquie was known in the EDS community world wide. And she has inspired fellow EDS zebra's to remain positive and to not give up on searching a better quality of life. It has helped fellow EDS zebra's to find support with their surroundings.

Don't judge by what you don't know please. It's also hurtful to read for other invisible illness patients.

So like, why has nobody cared about EDS before 2017? Why is everyone popping up with muh eehylers danylos now?

 

[Frazzle]

Today we all have EDS. Blessed be our collagen.

 

[chronicallybullshitting]

So like, why has nobody cared about EDS before 2017? Why is everyone popping up with muh eehylers danylos now?

Because they saw one person get “famous” off the internet with it & saw how many benefits they could get & decided “hey i will jump on this bandwagon, it’s a trendy illness to have because it’s so rare & special” and they actively try to copy the “famous” idiot, who completely misrepresents EDS & ends up with a port & a feeding tube & whatever else they can munchie their way into, all in the name of attention.

When in reality, if half these people actually had it they’d shut the fuck up about it and try to live a normal life, without bragging about how sick they are with their laundry list of illnesses, because it makes them look like needy attention seeking cunts who will never be independent and live a normal life.

 

[Ruchama]

So like, why has nobody cared about EDS before 2017? Why is everyone popping up with muh eehylers danylos now?

Because now the research has restarted and it's time to get the world to what this condition is.
Times are changing and so are the ways EDS zebra's take action now.

 

[Cheeseman]

but it's expected to as much as 1 in 200 have it

that must be a stupid instagram fact or something passed around your spoonie groups on facebook.

well, let me elaborate. its believed that 1 in 200 could be hypermobile and go without being diagnosed but to have debilitation wheelchair necessary eds like your ilk claim, its so doubtful

 

[chronicallybullshitting]

Because now the research has restarted and it's time to get the world to what this condition is.
Times are changing and so are the ways EDS zebra's take action now.

Please leave “EDS zebras” ... there is no space for OTT munchie behaviour on this thread.

You clearly know nothing about EDS, and you’re making an embarrassment of yourself with your “spoonie group facts”

If you have nothing constructive to say about Jaquie, or the situation involving her, thn leave, or shut the hell up & read the thread in silence.

 

[HP Lovecrafts Cat]

News flash for all the sooper speshul chronic illness spoonie warrior spergs here:

I HAVE EDS & STILL THINK SHE WAS FULL OF SHIT

Sorry, not sorry. Get a fucking grip, stop blogposting & move the hell on. She died, granted she may have had some legitimate health issues, but you can’t deny she exaggerated the shit out of them & cried wolf one to many times, clearly.

I stopped watching her videos a long time ago, but has she EVER shown off that she has EDS like actual EDS patients on YouTube? This one girl was putting in her feeding tube feeds and her hip dislocated in the middle of her speaking.

Also to talk about Harlow: it saddens me that so many Service Dog handlers are giving their condolences and it makes me wonder how they didn't see the hip dysplasia. And if AJ was smoking MMJ couldn't have Harlow been effected since... y'know... weed is deadly to dogs?

 

[pinkbutterfly]

So like, why has nobody cared about EDS before 2017? Why is everyone popping up with muh eehylers danylos now?

Apart from the outright fakers, from what I can tell it also attracts a lot of hypochondriacs or the "there MUST be something wrong with me" group. The symptoms list is pretty long and if someone is already convinced that their slightly above average flexibility is, in fact, Not Normal and makes them Very Special, it's easy to project onto it.

I've seen a lot of people who have been 'searching' for what's wrong with them for a long time and they seem to latch onto EDS an awful lot, often exaggerating symptoms so that they can match more than just one of them (because a lot of it can be caused by other issues).

I think some of them are honestly desperate to fix whatever is wrong, some are hypochondriacs or attention-seekers, and some are making it up entirely. There are of course legit cases too, and they're probably rising in number with better testing and awareness etc.

 

[Umaibae]

Honestly she was sick. She had a lot of issues. She had true diagnoses. Dont sit there acting like you know her when you dont.

But she isnt a munchie. She had true diagnoses. Her most recent was the RE DIAGNOSIS OF Mitochondrial. She was diagnosed a second time and this time around was given treatments which she was told by previous doctors there was no treatments to her mito.

If she had ANYTHING, it was a mild autoimmune disorder (which a lot of people have and NEVER know about and aren't cureable), opiate addiction and probably a case of, like, celiac's which she interpreted to be OMG SPESHUL TUMMY PROBLEM and really just made her bloated and poopy.

Everything else she claimed is VERY RARE to have at such "serious" levels. I don't doubt thing like EDS are "real," but severe cases are probably super uncommon and it's not overdiagnosed thanks to idiots like Jaqui.

In what world did someone with her "conditions" need feeding tubes?

Here come the munchies and white knights powerleveling all over the place!

ONE COW LEAVES, TWO COWS ENTER! A Munchie Miracle!

She ain't dead, shouldn't there be an obituary by now if she were dead?

I don't think people know why obits exist in their common form and how they are made. They're used to announce services, cost a LOT of money and generally don't appear until services are finalized. I had a family member pass last year, and their obit didn't run until two weeks after the fact due to the cremation and other planning stuff.

So like, why has nobody cared about EDS before 2017? Why is everyone popping up with muh eehylers danylos now?

Jealousy and idiocy. I know a few doctors and will ask them about EDS this week.

 

[Ruchama]

that must be a stupid instagram fact or something passed around your spoonie groups on facebook.

well, let me elaborate. its believed that 1 in 200 could be hypermobile and go without being diagnosed but to have debilitation wheelchair necessary eds like your ilk claim, its so doubtful

It's actually leading investigating specialist saying this. And no, 10-15% of the people are considered hypermobile.

 

[chronicallybullshitting]

I stopped watching her videos a long time ago, but has she EVER shown off that she has EDS like actual EDS patients on YouTube? This one girl was putting in her feeding tube feeds and her hip dislocated in the middle of her speaking.

Also to talk about Harlow: it saddens me that so many Service Dog handlers are giving their condolences and it makes me wonder how they didn't see the hip dysplasia. And if AJ was smoking MMJ couldn't have Harlow been effected since... y'know... weed is deadly to dogs?

I’m not sure, some things that bothered me about jaq & her proclaimed “EDS”

The fact that several doctors told her she didn’t have it for a start.

She claimed rib dislocations. I don’t know for everyone else, but most people that dislocate a rib go straight to ER afterwards because of the extremely high risk of puncturing your lung relocating it.

She claimed hip & shoulder dislocations on several occasions, but never showed any videos of them , yet she’s completely okay showing graphic videos of her stoma, which are much more greusom than a dislocation.

 

[Durable Mike Malloy]

So like, why has nobody cared about EDS before 2017? Why is everyone popping up with muh eehylers danylos now?

In 2017, an important review paper on EDS was published, updating its classification to include rare forms of the disease that were discovered subsequent to 1997. Patients who did not meet the diagnostic criteria for "hypermobile" and "classical" forms of EDS could begin matching their symptoms with these updated diagnostic criteria and pursue genetic testing.

Some genes associated with recently described types of Ehlers-Danlos syndrome have functions that seem unrelated to collagen, and how these mutations lead to features observed with these conditions remains an open question. This opened a window for hypochondriacs and outright fakers to claim some sort of underdiagnosed rare variant and handwave away inconsistencies of their presentation.

Because now the research has restarted and it's time to get the world to what this condition is.
Times are changing and so are the ways EDS zebra's take action now.

As EDS genetics are better understood, the window for hypochondriacs and outright fakers to claim some sort of underdiagnosed rare variant is closing.

It's actually leading investigating specialist saying this. And no, 10-15% of the people are considered hypermobile.

Citations, please.

 

[Yutyrannus]

Because now the research has restarted and it's time to get the world to what this condition is.
Times are changing and so are the ways EDS zebra's take action now.

It was a rhetorical question ya damn munch lol

In 2017, an important review paper on EDS was published, updating its classification to include rare forms of the disease that were discovered subsequent to 1997. Patients who did not meet the diagnostic criteria for "hypermobile" and "classical" forms of EDS could begin matching their symptoms with these updated diagnostic criteria and pursue genetic testing.

Some genes associated with recently described types of Ehlers-Danlos syndrome have functions that seem unrelated to collagen, and how these mutations lead to features observed with these conditions remains an open question. This opened a window for hypochondriacs and outright fakers to claim some sort of underdiagnosed rare variant and handwave away inconsistencies of their presentation.

Actually that's pretty interesting. Thanks for sharing. I'm kind of surprised the surge in EDS spoonie warriors directly coincides with this. Do they keep up with medical literature?

That also leads me to wonder, is it the same with POTS?

 

[Kate Farms Shill]

Know this, "zebras:" Jaq, had she survived, would have eventually dumped her EDS diagnosis for something else. Nothing she ever claimed stuck around once she found something better and rarer to replace it. she was already halfway there with her shiny new “mito” variant that only two people were known to have. She would have left all you filthy casuals in the gutter still begging for her attention.

 

[Troonos]

Honestly she was sick. She had a lot of issues. She had true diagnoses. Dont sit there acting like you know her when you dont.

But she isnt a munchie. She had true diagnoses. Her most recent was the RE DIAGNOSIS OF Mitochondrial. She was diagnosed a second time and this time around was given treatments which she was told by previous doctors there was no treatments to her mito.

You're in part responsible for her death. All of this asspatting and enabling from her fans, friends, and family were the real cause of her death.

 

[pinkbutterfly]

Know this, "zebras:" Jaq, had she survived, would have eventually dumped her EDS diagnosis for something else. Nothing she ever claimed stuck around once she found something better and rarer to replace it. she was already halfway there with her shiny new “mito” variant that only two people were known to have. She would have left all you filthy casuals in the gutter still begging for her attention.

Wow, just catching up on the trip to the mito doctor now. Hearing 2nd in the world must have been music to her ears...

(I followed her for a while but forget about her after the fistula... did that ever really get used? I remember she didn't seem as thrilled with it post-surgery as some of her other procedures).

Edit: ouch, this is a sad one -she's talking at ~4:00 here about how her new geneticist is happy with her feeding tube for medication instead of food, and that's why she's planning to keep it for a while... this was just about a month ago:

Spoiler: Video Link

 

[Durable Mike Malloy]

I'm kind of surprised the surge in EDS spoonie warriors directly coincides with this. Do they keep up with medical literature?

Heck yes, to the point where showing up at a doctor's office seeming "highly informed" can be a red flag to clinicians.

If you're devoted to sitting on the internet looking up new ways to be sick, it's pretty easy to become better acquainted with the peer-reviewed literature on your disorder du jour than most medical doctors have any reason to be. And you can see in this thread how Jaquie shared tips on getting a preferred diagnosis based on the flimsiest of pretexts with others in her circle. It's creepy how "spoonie" communities so often seem to devolve into Munchausen journal club.

 

[A Seagull]

Christ, Munchies are the Hydra of lolcows. Cut off one head, two more will grow in their place.
Funfact- there's plenty of kiwis who have this illness or that disorder. Most of us shut the fuck up about it because literally no one cares. Unless you have actual sources for your horse shit insta-spoonie claims, clam it with the WELL EVERYONES ILLNESSES ARE DIFFERENT. uw u
But in reality- they're really not that much different. The fact that classifications exist prove that there's enough similarities.
Yes, vascular and other types of EDS exist. There's 4 types total, not the 9001 that you spoonies like to claim.

 

[Kate Farms Shill]

Wow, just catching up on the trip to the mito doctor now. Hearing 2nd in the world must have been music to her ears...

(I followed her for a while but forget about her after the fistula... did that ever really get used? I remember she didn't seem as thrilled with it post-surgery as some of her other procedures).

Edit: ouch, this is a sad one -she's talking at ~4:00 here about how her new geneticist is happy with her feeding tube for medication instead of food, and that's why she's planning to keep it for a while... this was just about a month ago:

Spoiler: Video Link

She claimed she was but was nervous about using it unassisted and waiting for Judd to be more comfortable accessing it.

I think that was one of things she realized was a mistake somewhere in the deep reptilian part of her brain.

 

[repentance]

Yes some people with hEDS die from complications of the weak connective tissue.

That's not what she died from, though.