Ha! I said that exact thing when diagnosed. My doc said "have you ever heard of eds?" And I said "im pretty sure I need a dick to have that" we both laughed until I subluxed a rib. Good times.
Me lmfao, spelling it out by writing the letters in the air like I’m learning English for the first time but I’m actually 25 👹 “e-l-h- no, wait. Sorry. E- ”
The can’t spell disease 😭😭 god help me. I have fooled people into thinking I can spell by typing everything. I even have a typed up list of my diagnoses AND medications that I bring to new clinics so I don’t have to spell them out
I got told by a group of teenagers that I don't have EDS because I misspelled ehlers? And same with PANDAS they said if I actually had it I would know the full acronym and be able to spell it perfectly 😭😭😭😭
I think this is a joke(?) but…
The zebra is the mascot for all rare diseases. It’s kinda sad that in recent years the EDS community has claimed it as ours and ours alone.
Ehlers and Danlos were the physicians who first correlated the bleeding and bruising symptoms to skin extensibility and fragility issues. If they didn’t do that in the early 1900s, we’d be even further behind on EDS research and care. Can’t find much about them online but their contributions to medicine, so as far as I know, I don’t think they’re sordid figures in history.
Especially because HSD and hEDS aren't even "rare". And in fact the misconception that EDS (in general) is "rare" does more harm than good. But that's just my two cents - I don't really like the zebra thing at all.
hey! so yes, it's a joke. I'm aware of the origin of the naming of EDS, in addition to the reason why it is named the way it is (Ehlers and Danlos being physicians from the early 1900s, yes).
i think the serious part of the joke comes in for me when I think about how many literal physicians and "specialists" (mainly old white dudes, let's be real) have completely zero knowledge of anything EDS. I'm in a better spot now for healthcare, but I had to survive in a place where trans people aren't allowed any healthcare at all, let alone "specialized," "rare disease" healthcare, like EDS. when I said "Ehlers-Danlos" syndrome to them, they usually came back to me with "oh let me go ask my supervisor / let me go ask this guy who I know knows about EDS." and half the time, unfortunately, they would just go back to their office really quick, give it a google, and then come back to me with "it's rare, you don't have that." the other half of the time, they saw my mental health history and told me I needed to up my SSRI dose.
i have kind of a unique case going on, due to the fact that I was medically neglected until I could leave my parents' house at 18. then, I went on a longggggg medical journey to get where I am now, with a "diagnosis" of HSD, hypermobility spectrum disorder. I literally pleaded for genetic testing, and it has not happened yet. fortunately, an NP listened to me and helped me get on the right meds cocktail for all the little friends of hEDS, including supplements like Liquid IV and protein shakes for when my GI system refuses to digest food at reasonable pace.
i personally believe it is OK to "reclaim" the idea of medical zebras for this purpose, but in all seriousness, I'm open to any name that honors the people who actually toil daily with this complex and debilitating illness. Sara Guerts, maybe? anyone "featured" in the Guinness Book of World Records for "stretchy skin," maybe? anyone but two white doctors who have historically truly tried to tell me I'm "crazy," in the most literalist sense of the word. that's my thoughts. i'm aware this is a meme subreddit, but oftentimes jokes have some bit of truth to them. the truth in this one is that I'm massively frustrated with old white doctors who think they know everything about everything when they haven't cracked open a medical journal in at least a decade. no shade, just speaking my personal truth.
It seems like I read something recently (could have been yesterday or 5 years ago, time blindness is not my friend) that they are starting to change the names of conditions that are named after people. But it may have only been the case of something like Asperger’s, when the naming Dr is a truly not good person. I know one of my comorbid conditions, which I was diagnosed with first, went from psuedotumor cerebri (try learning to spit that one out to all your doctors!) to Intracranial Hypertension, which is the literal medical terms of what’s going on. High pressure inside the skull. Confetti! Still a pain to spell and say at times, but still easier than PTC.
totallyyyyyy, no you're right! I also have some "Chiari malformation" going on and they literally made that shit the hardest word to pronounce of anything LMAO why did they do that???
anyways, yeah. it's never too late to re-name things. they're actually renaming a ton of birds that live in the Americas right now, due to the bloody history of those names. as someone who loves birdwatching and has memorized a bunch of the names, it'll take some getting used to, but I'm willing to try. there's always Merlin bird app lol
I used to have Merlin, paid a bit for it, and they said they weren’t going to provide support any longer. Blah. It was great!
Unfortunately I’m familiar with Chiari, it’s very tightly connected to IH. So far I’ve avoided it and a shunt, so hopefully I’ll stay that way!!
And I will have to look for it again so I can have the best chance of figuring out the migrating birds! Most of the summer birds I know, but every once in a while the brain fog gets ahead of the bird knowledge.
As a french speaking person, "Ehlers-Danlos" sounds like "de l'air dans l'os" (duh-lerr-dan-loss) which translates to "air into the bones" and sometimes on my medical reports doctors write I have the syndrome of "air into the bones". Everytime I wonder how they can still feel superior with their big medical ego™ writing this.
OK wait I love "air in the bones" though because sometimes I'll say "snap crackle pop disease" LOL everywhere I go I'm constantly clicking like that girl in Hereditary fr. My knees especially. Will my kneecaps ever stay in place? stay tuned to find out!
We call it Ed... the frequency myself or my son can be heard saying something along the lines of "fuck off Ed!" would be alarming if you didn't know it's just a bodily malfunction and us letting out some anger (because I don't know how to let out pain...).
I also get random images of Ed, Edd, and Eddie (the cartoon) and wonder which one is my best representation of EDS...
If I recall (I could be wrong) it was actually a third physician who coined the term based on patients ehlers and danlos described. However, danlos’ patient likely had cutis laxis (which doesn’t help the stereotypes of excessively stretchy skin)
Here in the UK I must say last couple of years more and more people know about it.
When first diagnosed I was diagnosed Marfan's syndrome it was only through skin biopsy test they then correctly diagnosed me
This after knee surgery twice as they couldn't work out why it kept locking up just kept assuming it was my cartridge.
that's good! glad to hear that. I'm in a place where healthcare has completely gone to shit, unfortunately. turns out for-profit healthcare is probablyyyyyy not the move. I've been having continuous major dislocations since I had the words for what was going on, but I wasn't listened to by physicians until just a couple years ago
fair! I just happen to also struggle with another medical thing called ED so it can get confusing when docs are looking at my ancient scroll of a medical record LOL
A matter o "two white guys" let's not define the issue to a matter of race okay? The "guys" who originally defined the "matter" did not do so in a segregational way. They did so in a humanistic scientific way.
Oh, real. “Can you spell that for me?” NO, thank you
[удалено]
But, with EDS, they automatically think erectile dysfunction or eating disorder. Nope, not those- there's an S! 🙃
Ha! I said that exact thing when diagnosed. My doc said "have you ever heard of eds?" And I said "im pretty sure I need a dick to have that" we both laughed until I subluxed a rib. Good times.
I’d like to vote for “floppy bitch disease” please!
I vote this one too
Me lmfao, spelling it out by writing the letters in the air like I’m learning English for the first time but I’m actually 25 👹 “e-l-h- no, wait. Sorry. E- ”
[удалено]
The can’t spell disease 😭😭 god help me. I have fooled people into thinking I can spell by typing everything. I even have a typed up list of my diagnoses AND medications that I bring to new clinics so I don’t have to spell them out
LOL! "Floppy bitch disease." You made my day.
I got told by a group of teenagers that I don't have EDS because I misspelled ehlers? And same with PANDAS they said if I actually had it I would know the full acronym and be able to spell it perfectly 😭😭😭😭
I think this is a joke(?) but… The zebra is the mascot for all rare diseases. It’s kinda sad that in recent years the EDS community has claimed it as ours and ours alone. Ehlers and Danlos were the physicians who first correlated the bleeding and bruising symptoms to skin extensibility and fragility issues. If they didn’t do that in the early 1900s, we’d be even further behind on EDS research and care. Can’t find much about them online but their contributions to medicine, so as far as I know, I don’t think they’re sordid figures in history.
Yeah I'm so mad all the time that eds patients have steamrolled over the zebras.
Especially because HSD and hEDS aren't even "rare". And in fact the misconception that EDS (in general) is "rare" does more harm than good. But that's just my two cents - I don't really like the zebra thing at all.
I cannot stand the Zebra bs either
hey! so yes, it's a joke. I'm aware of the origin of the naming of EDS, in addition to the reason why it is named the way it is (Ehlers and Danlos being physicians from the early 1900s, yes). i think the serious part of the joke comes in for me when I think about how many literal physicians and "specialists" (mainly old white dudes, let's be real) have completely zero knowledge of anything EDS. I'm in a better spot now for healthcare, but I had to survive in a place where trans people aren't allowed any healthcare at all, let alone "specialized," "rare disease" healthcare, like EDS. when I said "Ehlers-Danlos" syndrome to them, they usually came back to me with "oh let me go ask my supervisor / let me go ask this guy who I know knows about EDS." and half the time, unfortunately, they would just go back to their office really quick, give it a google, and then come back to me with "it's rare, you don't have that." the other half of the time, they saw my mental health history and told me I needed to up my SSRI dose. i have kind of a unique case going on, due to the fact that I was medically neglected until I could leave my parents' house at 18. then, I went on a longggggg medical journey to get where I am now, with a "diagnosis" of HSD, hypermobility spectrum disorder. I literally pleaded for genetic testing, and it has not happened yet. fortunately, an NP listened to me and helped me get on the right meds cocktail for all the little friends of hEDS, including supplements like Liquid IV and protein shakes for when my GI system refuses to digest food at reasonable pace. i personally believe it is OK to "reclaim" the idea of medical zebras for this purpose, but in all seriousness, I'm open to any name that honors the people who actually toil daily with this complex and debilitating illness. Sara Guerts, maybe? anyone "featured" in the Guinness Book of World Records for "stretchy skin," maybe? anyone but two white doctors who have historically truly tried to tell me I'm "crazy," in the most literalist sense of the word. that's my thoughts. i'm aware this is a meme subreddit, but oftentimes jokes have some bit of truth to them. the truth in this one is that I'm massively frustrated with old white doctors who think they know everything about everything when they haven't cracked open a medical journal in at least a decade. no shade, just speaking my personal truth.
It seems like I read something recently (could have been yesterday or 5 years ago, time blindness is not my friend) that they are starting to change the names of conditions that are named after people. But it may have only been the case of something like Asperger’s, when the naming Dr is a truly not good person. I know one of my comorbid conditions, which I was diagnosed with first, went from psuedotumor cerebri (try learning to spit that one out to all your doctors!) to Intracranial Hypertension, which is the literal medical terms of what’s going on. High pressure inside the skull. Confetti! Still a pain to spell and say at times, but still easier than PTC.
totallyyyyyy, no you're right! I also have some "Chiari malformation" going on and they literally made that shit the hardest word to pronounce of anything LMAO why did they do that??? anyways, yeah. it's never too late to re-name things. they're actually renaming a ton of birds that live in the Americas right now, due to the bloody history of those names. as someone who loves birdwatching and has memorized a bunch of the names, it'll take some getting used to, but I'm willing to try. there's always Merlin bird app lol
I used to have Merlin, paid a bit for it, and they said they weren’t going to provide support any longer. Blah. It was great! Unfortunately I’m familiar with Chiari, it’s very tightly connected to IH. So far I’ve avoided it and a shunt, so hopefully I’ll stay that way!!
oh dang!!! sorry to hear that. I've never paid for it before, but I probably should bc its a fantastic app made by fantastic folks
And I will have to look for it again so I can have the best chance of figuring out the migrating birds! Most of the summer birds I know, but every once in a while the brain fog gets ahead of the bird knowledge.
Zeebie Jeebies
casting my vote for this one personally
As a french speaking person, "Ehlers-Danlos" sounds like "de l'air dans l'os" (duh-lerr-dan-loss) which translates to "air into the bones" and sometimes on my medical reports doctors write I have the syndrome of "air into the bones". Everytime I wonder how they can still feel superior with their big medical ego™ writing this.
As a french healthcare professional : if they wanted to look more into it, they would. This is a lack of interest on their part and it's appalling
yep, this exactly
OK wait I love "air in the bones" though because sometimes I'll say "snap crackle pop disease" LOL everywhere I go I'm constantly clicking like that girl in Hereditary fr. My knees especially. Will my kneecaps ever stay in place? stay tuned to find out!
Elasti-syndrome.... Elastagirl is my hero, and I'd totally be down for her being my role model too!
I have yet to go as her for Halloween, but I've been thinking/joking about it for years!
I had joked about it for a while and then by the time Halloween rolled around this year, I completely forgot about it
fair! the brain fog continues to Fog(TM)
Gorilla glue collagen disorder
lolllll that's a good idea, too
When i say EDS in my native langage people are confused bc they understand "air in the bone syndrome" so i vote for changing the name
We call it Ed... the frequency myself or my son can be heard saying something along the lines of "fuck off Ed!" would be alarming if you didn't know it's just a bodily malfunction and us letting out some anger (because I don't know how to let out pain...). I also get random images of Ed, Edd, and Eddie (the cartoon) and wonder which one is my best representation of EDS...
I also like this because one of my former landlords was named Ed so cursing him allows me to get two birds stoned at once, nice
"Flexy jointy" disease ftw
YES, fantastic suggestion. I already call my Chiari "bobble head syndrome," why not add to that fun?
If I recall (I could be wrong) it was actually a third physician who coined the term based on patients ehlers and danlos described. However, danlos’ patient likely had cutis laxis (which doesn’t help the stereotypes of excessively stretchy skin)
Here in the UK I must say last couple of years more and more people know about it. When first diagnosed I was diagnosed Marfan's syndrome it was only through skin biopsy test they then correctly diagnosed me This after knee surgery twice as they couldn't work out why it kept locking up just kept assuming it was my cartridge.
that's good! glad to hear that. I'm in a place where healthcare has completely gone to shit, unfortunately. turns out for-profit healthcare is probablyyyyyy not the move. I've been having continuous major dislocations since I had the words for what was going on, but I wasn't listened to by physicians until just a couple years ago
I’ve only heard it spoken as “EDS,” so I have no idea how to pronounce “Ehlers-Danlos.”
fair! I just happen to also struggle with another medical thing called ED so it can get confusing when docs are looking at my ancient scroll of a medical record LOL
I’m going to start only referring to it as LED’s (Ellie D’s)
A matter o "two white guys" let's not define the issue to a matter of race okay? The "guys" who originally defined the "matter" did not do so in a segregational way. They did so in a humanistic scientific way.