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Increase in Ehlers-Danlos (especially hypermobility type) patients?

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ArtClassRN has 8 years experience as a ADN, RN and works as a RN-BC.

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I didn't realize you meant the students literally are in the same private school. That sounds very very suspicious.

Correlation is correlation.

I could come up with at least one other reasonable theory for this phenomenon.

Not that a basic inquiry isn't appropriate...

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blondy2061h has 9 years experience as a MSN, RN and works as a Nurse, duh!.

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It started on YouTube. There's a prominent cystic fibrous vlogger who vlogs daily- Mary Frey. She's quite popular among the "Spoonie" community. Then came Chronically Jaquie. She started the daily vlogging thing too and seemed to copy Mary routinely. Jaquie started pretty tame but quickly collected more diagnoses and more "tools:" a port, wheelchair, GJ tube, then separate g and j tube (before trying an NJ!) with the covetted Kate Farms formula, then AFOs and a whole exoskeleton worth of braces, IV ketamine on the regular, medical marijuana, Dilaudid, unlimited IV push Benadryl, etc. To tell you how ridiculous she is she now says she's getting an AV fistula. For IV access. For fluids.

Now it's a trend. There are hundreds of people just like this on Instagram and Youtube all exactly like you describe. Feeding tube but clearly able to eat. Ports for no good reason. Only Kate Farms formula. Wheelchairs with power assist, pimped out and styled to their preference- but perfectly toned muscles. It's really bizarre.

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TriciaJ has 35 years experience as a RN and works as a Retired.

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It started on YouTube. There's a prominent cystic fibrous vlogger who vlogs daily- Mary Frey. She's quite popular among the "Spoonie" community. Then came Chronically Jaquie. She started the daily vlogging thing too and seemed to copy Mary routinely. Jaquie started pretty tame but quickly collected more diagnoses and more "tools:" a port, wheelchair, GJ tube, then separate g and j tube (before trying an NJ!) with the covetted Kate Farms formula, then AFOs and a whole exoskeleton worth of braces, IV ketamine on the regular, medical marijuana, Dilaudid, unlimited IV push Benadryl, etc. To tell you how ridiculous she is she now says she's getting an AV fistula. For IV access. For fluids.

Now it's a trend. There are hundreds of people just like this on Instagram and Youtube all exactly like you describe. Feeding tube but clearly able to eat. Ports for no good reason. Only Kate Farms formula. Wheelchairs with power assist, pimped out and styled to their preference- but perfectly toned muscles. It's really bizarre.

This is a scary extension of "Ask your doctor is *Miracle Drug* is right for you!" Now people are being allowed to self-prescribe all kinds of stuff. The plug really needs to be pulled on this nonsense.

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I think what she is trying to say is these particular patients she encountered do not have a conclusive dx. Mental health comes into question because they are stating they have symptoms and insisting on specific interventions for an issue that may not actually exist.

ETA-she states many have eating disorders which is psychiatric dx in itself.

I can understand that, but wouldn't they still have active bowel sounds. Do bulinics not have active bowel sounds?

Mine where literally absent. I had gone to the ER over the weekend prior for belly pain and was told I was extremely comstipated. I was told to take MOM which I did. By Monday, I was in super bad shape and desperately called a gastro that had done a scope on me 3 years prior. They got me in that day. I had lost 30lbs at that point. The gastro even asked me why are even here when he read the ER report. Then he listened to my belly. No bowel sounds. He pretty much diagnosed me right there. But I had the radioactive egg done to confirm.

I see this has to do with teenage girls from the same school if I'm reading correctly? These girls know about gastropariesis and are trying to fake it?

I don't get that. It's a horrible disease.

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79 Likes; 6,912 Visitors; 910 Posts

It started on YouTube. There's a prominent cystic fibrous vlogger who vlogs daily- Mary Frey. She's quite popular among the "Spoonie" community. Then came Chronically Jaquie. She started the daily vlogging thing too and seemed to copy Mary routinely. Jaquie started pretty tame but quickly collected more diagnoses and more "tools:" a port, wheelchair, GJ tube, then separate g and j tube (before trying an NJ!) with the covetted Kate Farms formula, then AFOs and a whole exoskeleton worth of braces, IV ketamine on the regular, medical marijuana, Dilaudid, unlimited IV push Benadryl, etc. To tell you how ridiculous she is she now says she's getting an AV fistula. For IV access. For fluids.

Now it's a trend. There are hundreds of people just like this on Instagram and Youtube all exactly like you describe. Feeding tube but clearly able to eat. Ports for no good reason. Only Kate Farms formula. Wheelchairs with power assist, pimped out and styled to their preference- but perfectly toned muscles. It's really bizarre.

What!???

I can't even.

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DextersDisciple has 5 years experience.

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I can understand that, but wouldn't they still have active bowel sounds. Do bulinics not have active bowel sounds?

Mine where literally absent. I had gone to the ER over the weekend prior for belly pain and was told I was extremely comstipated. I was told to take MOM which I did. By Monday, I was in super bad shape and desperately called a gastro that had done a scope on me 3 years prior. They got me in that day. I had lost 30lbs at that point. The gastro even asked me why are even here when he read the ER report. Then he listened to my belly. No bowel sounds. He pretty much diagnosed me right there. But I had the radioactive egg done to confirm.

I see this has to do with teenage girls from the same school if I'm reading correctly? These girls know about gastropariesis and are trying to fake it?

I don't get that. It's a horrible disease.

I was found to be "FOS" at the ER too, recommended mag citrate and back to square

One a week later. I just don't think a bowel sounds assessment was enough though. Mine were very hypo and I didn't vomit, just extremely bloated, nauseous and constantly

Burping with regurge. Never lost weight, darn! (Kidding) off topic but I guess it affects people differently.

Very random disorder to pick to play pretend. This all sounds like A lot of Factitious disorder patients. Apparently this is the new DSMV title for Munchaussen (spelling?).

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CharleeFoxtrot has 7 years experience as a ADN, RN.

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What!???

I can't even.

Me neither, though I have had similar patients in my career I'll never understand that behavior in which diseases and debilities are cherished and embraced like a loved one.

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ventmommy works as a Respiratory Therapist.

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It started on YouTube. There's a prominent cystic fibrous vlogger who vlogs daily- Mary Frey. She's quite popular among the "Spoonie" community. Then came Chronically Jaquie. She started the daily vlogging thing too and seemed to copy Mary routinely. Jaquie started pretty tame but quickly collected more diagnoses and more "tools:" a port, wheelchair, GJ tube, then separate g and j tube (before trying an NJ!) with the covetted Kate Farms formula, then AFOs and a whole exoskeleton worth of braces, IV ketamine on the regular, medical marijuana, Dilaudid, unlimited IV push Benadryl, etc. To tell you how ridiculous she is she now says she's getting an AV fistula. For IV access. For fluids.

Now it's a trend. There are hundreds of people just like this on Instagram and Youtube all exactly like you describe. Feeding tube but clearly able to eat. Ports for no good reason. Only Kate Farms formula. Wheelchairs with power assist, pimped out and styled to their preference- but perfectly toned muscles. It's really bizarre.

Thanks Blondy....I lost 3 hours of my day falling into a rabbit hole of craziness because I decided to Google this. OMG. Insanity.

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ClaraRedheart has 4 years experience as a BSN, RN and works as a Med-Surg Tele Nurse.

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Thanks Blondy....I lost 3 hours of my day falling into a rabbit hole of craziness because I decided to Google this. OMG. Insanity.

Same here! Haha! I think they call themselves spoonies cuz they all clearly have the Munchies... Munchhausens, I mean. I'm sure that some have some legit illnesses, but this is just whackadoodle!

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blondy2061h has 9 years experience as a MSN, RN and works as a Nurse, duh!.

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Thanks Blondy....I lost 3 hours of my day falling into a rabbit hole of craziness because I decided to Google this. OMG. Insanity.

Sorry! It really is just nuts.

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Thanks Blondy....I lost 3 hours of my day falling into a rabbit hole of craziness because I decided to Google this. OMG. Insanity.

Add me on that list. Between YouTube and a Reddit thread, I wasted my day. They all seem to be young caucasian women of a certain age group. My heart goes out to any healthcare worker who sees these people on a regular basis.

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Penelope_Pitstop has 13 years experience and works as a Registered Nurse.

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It started on YouTube. There's a prominent cystic fibrous vlogger who vlogs daily- Mary Frey. She's quite popular among the "Spoonie" community. Then came Chronically Jaquie. She started the daily vlogging thing too and seemed to copy Mary routinely. Jaquie started pretty tame but quickly collected more diagnoses and more "tools:" a port, wheelchair, GJ tube, then separate g and j tube (before trying an NJ!) with the covetted Kate Farms formula, then AFOs and a whole exoskeleton worth of braces, IV ketamine on the regular, medical marijuana, Dilaudid, unlimited IV push Benadryl, etc. To tell you how ridiculous she is she now says she's getting an AV fistula. For IV access. For fluids.

Now it's a trend. There are hundreds of people just like this on Instagram and Youtube all exactly like you describe. Feeding tube but clearly able to eat. Ports for no good reason. Only Kate Farms formula. Wheelchairs with power assist, pimped out and styled to their preference- but perfectly toned muscles. It's really bizarre.

I...

Um...

uhhhh....

Yeah, I got nothin'. And I NEVER have nothing...

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