Reviewing EDS/POTS portrayals on tv
HTML-код
- Опубликовано: 7 сен 2024
- EDS and POTS have been portrayed on numerous TV shows. In this video, I watch, react, and review those scenes.
SUBSCRIBE TO MY CHANNEL ▶ bit.ly/2M4Ko0c
📸 Instagram ▶ / izzy.kornblau
⏰ TikTok ▶ / izzyk_dna
The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
✩ ✩ ✩ ✩ ✩ ✩
WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-dan...
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org...
❤️ cle.clinic/2p1...
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
#ehlerdanlossyndrome #ehlersdanlos #pots
I like what she said about a diagnosis, like of course it’s not a good thing but thank God it’s at least an answer. I feel like many can relate to that
@Lennox Adrian you’re right. Nobody gives a shit. You’re a horrible friend
Absolutely, I can relate to it in the way that I know that something is wrong with me but have not gotten a diagnosis yet so I don't know what I could do to until I get one
I was SO relieved or even happy when I finally got diagnosed with bipolar disorder at 27. Yes, it's chronic, incurable and severe, but I already knew whatever I had dealt with for decades was that bad. It took 11 years of (at least) weekly contact, including years of hospitalisations, for the psychiatry to get it right. And only because I pushed it. 6 years later I got diagnosed with inattentive ADHD. I wonder my life could've been if I had been diagnosed correctly sooner, gotten the right meds sooner. Maybe I'd be able to work part-time, or at least have a good life quality? Now I'm just so damaged by my mental struggles and traumatic mistreatment from the mental health care that I've more or less given up on having a good life. Correct and early diagnosis is of outmost importance for a lot of conditions.
It seems to me like the noises of joints being put back into place are grossly dramatized for the show
yeah i totally agree!!!
Normally for me it's not a crinkly crunch, more of just a very loud pop
yeah some of them are a bit much, but when i actually dislocate something sometimes that makes a loud nasty sound a lot like the show
Agreed! 🤦🏼♀️😂
Mine are mostly a grinding then pop! Not too loud.
I know this is really not the point of the video, but I love that the cat is climbing on the wheelchair in the background.
HAHHAHAHAHA I know right?!?!?!! she is obsessed with my wheelchair and is always in it. she looks like a little old lady and i love it
The most unrealistic thing was the doctors on Casualty actually giving a patient that much time and looking at their overall picture without the patient asking them too for years on end. Or even knowing what EDS is haha... At least it's free! Save the NHS!
It took the doctors 3 years, a dozen incorrect diagnoses and a shit ton of medical bills to get my mom to an EDS specialist. The dude took one look at her and knew exactly what she had. It's sad that so little people know of it when its actually not that rare
@@casuallyidiotic 15 years and counting for me
My new Dr just brought all this to my attention together just similar to the last one sitting there and having these things be validated for once and a name ... She said don't freak out when you look it up and it says these things ... I was like why it's all been happening since I was a kid I've lived with it I knew it was something.. but now it's not a thought in my head and it could have a voice ..I will after all the tests are done .. months scheduled out.. but grateful because it lead me here
NHS is BAD..people dying waiting for ambulances.
And it is free cause tax payers pay..and Americans all pay for the REAEARCH and development with grants. A lot of international research are done with USA tax payer money..
So that's another reason it costs more here.
Yes! And knowing that a diagnosis of EDS has to come from a specialist rheumatologist in the UK so it’s going to take a while. Months or years, in fact.
I watched the House episode and got really excited because I had never seen POTS in a medical show. However, they didn't stick with the POTS diagnosis, he had something else, so that might be why his heart rate was not accurate to portray POTS.
"I've got a thing!"
"It's not a great thing"
I know this feeling much too well! I have only been diagnosed with JHS, but for the longest time thought I was crazy. It's not a great thing, but oh gosh does it feel good to be able to put a name to it.
Honestly I have had multiple doctors say “ I read about ehlers Danlos patients in a paragraph in med school but we were told we’d never see one” if you start looking for a specialist you will see as common as this may be, it’s very hard to find a doctor to recognise. It can take years ( decades even) for many to be diagnosed
I cheered when this episode of “Casualty” first aired in the U.K.! It was the first time I’d ever seen EDS portrayed in the U.K.
I can TOTALLY relate to the part where the girl on the last video says "It has a name, I've got a thing! not great but it's an answer, I've never had an answer". Been struggling for years and when I finally got diagnosed I said the same! and felt exactly the same way
"It has a name- I have a thing!" "I have an answer." That's how I felt when I got my fibromyalgia diagnosis!
I’ve seen all three of those as well, I think personally my fave was the casualty one- yeah it DOES hurt like hell, but after 50 years of daily pain, not even knowing what pain free IS I can be pretty blase at least on the outside. I think I saw this one right after getting my dx, and could totally relate to her feeling validated about having a name for her “thing”!!! Also the eating disorder thing, I still get, which is so aggravating.
Lmao the POTS on house is weird. But laying down your heart rate doesn't go up, it goes up with postural changes. My POTS doesn't affect my BP much, but my Tachycardia gets dangerously high. Although as soon as I sit my HR does start to drop but not rapidly it gets back to normal within 5-10 minutes.
Twin Momma i think she was saying it wouldn’t go down so immediately after he fainted. It does go down but it wouldn’t be normal in seconds. Also my POTS doesn’t affect my blood pressure much either :)
how high does yours get? Do you take beta blockers? I have them but dont take them often
last time i was lying in the hospital i was wired to some monitor that quickly saw something rise to 160, think it was blood pressure since nurse asked if blood pressure is s always that high.
but maybe they only measured him when he got in and therefore assumed it was good, without continuously checking it
@@elliebrowne3651 for me it goes from 66 if im laying to 110-120 and stays there for 30 seconds- several minutes
55 bpm resting to 90 bpm standing is my average, I feel this.
I remember watching these pre-diagnoses with my husband and saying “I totally relate to this. That’s exactly how I feel” and he looked at me as if I had a third eye lol. Now it all makes so much sense!! And how funny I commented on each one and then later got my DX!
Cool vid! I sublux basically all the time and it doesn't hurt in the moment, but i will feel pain later. I'm not aware of any dislocations except my hip and when it has come out, it feels not painful, but very odd and like something is not right!
Same. My hips and SI constantly mess up and I typically don't really notice until the PT puts it back. Then I notice the pain gets less.
same here. Then later I get pain.
I am seriously the biggest house fan but there was also another episode where a woman's ONLY symptoms were miscarriages and hoarding tendencies... and she was diagnosed with EDS. no joint pain, no hyper mobility or skin issues, no medical history and no beighton score yet they came up with that...? I swear I have never been more confused and frustrated at a tv show in my life lmao
It pissed me off too. Very negative and unrealistic portrayal. Most common issues are pain and fatigue.
I had a doctor try to tell me I had panic disorder! I can relate
Tonight they featured a patient on the NBC show Transplant who had EDS. The portrayal seemed to present more along the lines of vascular type, although they only talked about it as EDS as if there weren't variations or different types. Somehow the TV actors confirmed the diagnosis with a skin biopsy. Although I'm happy to see TV shows promoted the awareness of EDS, I'm unsure if this was an accurate portrayal. The symptoms the TV patient had were dislocations, easy bruising, stitches tearing out and reopening a wound, and a ruptured bladder. They mentioned heart valve issues as well. This is very vEDS.
Transplant, season 1, episode 12. Perhaps if you get enough new TV portrayals of EDS, you could assemble them into another video like this one. :)
I empathize with the girl on that show so much. For years I was told everything I experience was from anxiety... Even when I had ridiculously elevated blood pressure (which is hyperadrenergic POTS) they said that it was from my anxiety. Like how would my anxiety cause my bp to go to 180/110? I had a doctor tell me that numbness I was feeling was anxiety and that I should get a fidget spinner to get my mind at ease. I also had doctors think I was anorexic... I don't have gastroparesis but I have irritable bowel. The offensive things that doctors came up with... It would take a year for me to write it all down.
What is unrealistic about this is doctors figuring this out so quickly. It has taken me twenty years to get proper diagnoses. It took my Apple watch alerting me of my elevated heart rate for me to finally figure this out, mostly on my own.
What's really crazy is that even if someone did have anxiety that was causing physical symptoms which were that bad, the medical profession should regard it as a serious illness that needs urgent treatment, not as something the patient can sort out with a few simple home remedies. The dismissal of serious symptoms because they are seen to be mental not physical is a curious prejudice of Western culture: one we could do with gently losing.I undoubtedly have anxiety. But when you are constantly having to concentrate desperately to rise without fainting and walk across a room without falling over, and being randomly and harshly blamed for mistakes, it is natural to be anxious. Assuming the anxiety causes the symptoms rather than the symptoms the anxiety isn't a particularly good move.(I have confirmed HSD, by the way, but they aren't sure what is causing it).
I think there are rare occasions where people do get into contact with a reasonable doctor that manages to help a bit, and then they kind of wonder why everyone else is complaining about doctors being difficult.
Same thing witht he apple watch, but it took me far less time! I heard of POTS from Chronically Jaquie when I was reading up on service dogs for something else, and when I started to feel symptoms of POTS i remembered what she said, searched up POTS, started measuring my heart rate using my watch and bow know I have POTS :)
On two different occasions I've been asked by a doctor and a nurse if I'm in an abusive relationship because of large bruises. I was living with just a cat. They were not abusive 😅
The Casualty one was extremely idealistic and unrealistic. She’d either have been admitted and the consultant would then tell her a very low and/or high BP and heart rate were because she’d been asleep all night or a neurologist would discharge her without physical examination telling her “sometimes our bodies and brains play tricks on us”. Her stroppy attitude would have been noted and counted against her. Some writers are less informed than doctors. 🤬
I like your new intro....The grey's anatomy did a pretty good job of depicting it. However, the House episode sounded more like orthostatic hypotension, rather than pots. Since they were more talking about the blood pressure dropping than the pulse going up. On Casualties, I know some of my joints don't always hurt when they go back, so I can sort of relate to that. It was a little off topic here and there, but I agree that the Grey's anatomy episode was the best. I will also say in a way I was happy when they said here is the name now you can not look like you are making things up.
The I have a thing response is spot on though! Also wish getting a diagnosis was as easy as going into A&E and describing a few symptoms.
The thing is it should be that easy, EDS symptoms is not rocket science. I don't have EDS but I am doing research on the condition.
A bit late to the party but they actually had someone with EDS help produce the Grey's anatomy episode!
Reality TV, but I was so excited to have representation on Rupaul's Drag Race. Qween Yvie Oddly even dressed up in zebra drag for the NY con 🦓💜
Yvie Oddly is my queen 👑👑👑
There is a House Md episode with someone with EDS, it's the episode 18 of the 7th season
Ok so I just watch the episode and the EDS isn't the focus of the episode, the patient was there for something else, sooo, not really anything to react to. Except a scene at the end.
Yeah, i was so disappointed by that House episode
@@sarahserenity3872 gosh me too it was basically just a throw away line!
I finally got my diagnosis this year and finding a channel talking about eds is amazing
The casualty one is great. But in the UK the A&E doctors don’t hang around and ask questions like that. Like the full cut together scene is 7ish minutes and you’d be so lucky to spend that kinda time with a doctor in an A&E if they weren’t doing a resus call. Chances are if a doctor noticed something funny about your joint movements and got a little bit of history, and they were happy your current complaint I.e dislocated shoulder was back in and slinged, plus your sitting obs were normal:.. they’d send you on your merry way with a referral to some kinda consultant, that you’d wait months for...
When the doctor said to me that I have EDS, I was SOOOO HAPPY. Like, I finally can tell people that I have something that has a name, and it's not just laziness
I hate that two of the shows called it “one in a million”. I guess that line on Casualty was more of a joke, because she did mention that hEDS is believed to be more common. But still.
It really helps bring awareness when shows or movies try to portray these conditions. Personally as a filmmaker if I can ever manage to get a feature film off the ground I'd love for all my films to have at least one character with EDS or Gastroparesis in particular.
I write fanfictions actually and give my male character EDS. I have tried common and rarer types
I relate to the whole “it has a name” type of feeling. Funny because I came across your channel a couple months ago after looking at things about hypermobility. Which I always knew I had. Then the Eds video you posted. Telling myself not to start thinking things. The next day I went to my doctor and didn’t bring it up. Just was asking if my ankle injury was worse because I’m hypermobile. And he said yea and eventually ended up asking about EDS. At the time we didn’t know anyone else in my family had it. But found out by the time my next doctor visit was (and funny enough I also had my first random dislocation that actually had no reason behind it) and so I’m newly diagnosed. And I love your videos 😊
Finally going on a joint rehabilitation course to learn how to control my muscles spasms that keep knocking my joints out 💜 I remember in my early days of having this and not being able to put it back myself due to fear of it and I went to the hospital with my shoulder disclocated and they sent me home saying it will only come back out again like last time and it should go back in on it's own; I spent a week with it out of joint (very painful for me) and ended up fainting and being sent back to A&E. They once again said no and then I asked for a new doctor, he was a shoulder specialist and showed me how to handle my shoulder and 3 years later hes suggested this rehab in London in Stanmore! Very excited! 💜💜💜
11:10 AMEN! It's an Answer! I know that exact feeling. I have people not only in my family and friends but I have had "Doctors" that have treated me like I was a faker. I know the feeling. There are some people that can treat you so bad and so many people that think that if your symptoms don't match the Doctors "Text Book" then it must not be real but the pain and struggles are very real.
A Diagnosis is a beautiful thing. Unfortunately there are lots of doctors out there that are "ABLEIST"! This is very Dangerous and will not help people. This happens because some one may not be the "Age" that the text book would say you should be to have what you are feeling. Tests will not be done and something is missed because they will only look at what you "should" be having not what you Could be having. For example EDS, your skin is stretchy and your joints can come out of place. Lets say someone can't fit the steps to be diagnosed because they have something else that they are too young to have by the text book and that makes thee symptoms of EDS not seen. Because of these factors a person could be mis diagnosed and never know what is hurting them because people use the word "NORMAL". This is what I have heard so much in my life and it hurts. When I go to my doctor or the ER and I am having a test I "PRAY" that they come back with Something? The saying "No news is good news" is really bad news. This is because everything in this "normal" world tries to make us to be "normal" that being disabled becomes a bad thing and it is making PWD People With Disabilities Suffer and Disappear and no longer exist. Maybe it is not so bad to be disabled and it is a normal thing because it's REAL!
Thank You for your videos. Keep it real.
love this comment so much!!
Ugh I totally agree! I don't have EDS, but I do have chronic pancreatitis. From that I have gastroparesis & type 3 diabetes. I can't even count how many times I've been coded as "alcoholic", also i MUST have an eating disorder because i weigh less than 100lbs (was 175) .. then tack on a mental illness because I don't fit their textbook. Or been told I'm not in a flair because my enzymes are normal. Which always ends in me yelling and educating them on the fact that my damn pancreas is broken, so .. NO my enzymes arent going to be elevated. Just because they're normal does not diminish the pain. Thankfully I've found a great Dr within the last year, but have to travel to a different state. I'll take that. People never really understand until they're going thru it.. and like you said "no news is good news" is actually terrible news. Seems to make them more confident to slap a mental label on it. What I'm really trying to say is "well said!!" 💜
Eh heh heh...
Is it bad that people have stopped believing because I'm a minor?
a big thing i liked about the last clip was how excited she was to finally have an answer, I was recently finally diagnosed with Gastroparesis (I have both mild pots and type one diabetes) its been such a relief to finally know whats wrong and what i can do...but still sucks hah
I thought the same thing that if that person had POTS, it would not have a normal heart rate.
...wait a second, you said that it would most likely get slower... wouldn't that be more like Bradycardia, rather than Tachycardia? Please correct me if I'm wrong; I am genuinely curious.
I know this is like my third comment lol, but I just have to say that my shoulder dislocates just like the girl on the show and it doesn't hurt usually, or just a little bit to pop it back in.
With that one girl that said she was “used to it” I wonder if it’s because she’s had it invalidated for so long that she doesn’t react anymore. Like I’m in constant pain but I’ve had so many people tell me ‘you always say your back hurts’ or ‘you always say your knees hurt… everyone has aches and pains’ that I was at the point where it was like…. Oh okay I’m apparently fine than, I just need to stop complaining. I had a few Drs just come right out and say “are you here for pain meds?!” And I’m like no… I’m here because my freakin body hurts and I want to know why!
More recently, the good doctor had an episode with vEDS, season 3 episode 16.
Really enjoyed this! I watched the casualty clips a while ago but the others were new to me! & I agree with you that it would still be painful to have a joint put back in even if it’s the hundredth time- mine aren’t too bad if I can put it straight back in myself, but when it’s been out for a while and has to be put back in by someone else (like that girl in the casualty one) you definitely do feel it! & I completely agree that the pain doesn’t get better, it’s just that you learn to live with it 😌
LOVE YOU (and you're arms)....no one else will understand this reply but you. hahahah
Izzy Kornblau love you too & oh my gosh hahaha
Wow if doctors actually KOWING about EDS or taking the time to hear my symptoms instead of just focusing on one and forgetting the rest is normal, I gotta get a new friggen doctor!
I relate to @7:20 I was told I had an eating disorder for years, it was horrendous. They caused me to lose more weight by forcing me to eat and making me ill. Luckily, I've been getting treatment for gastroparesis and have been able to gain some weight.
With the Casulty programme its also the character is very English and the way the doctors sort it is accurate to it over here. There are specialists we get sent to for more in depth things. We are getting there for EDS
I have EDS, too! It’s very painful and I hurt quite a lot from it!
none of my doctors had ever heard of Ehlers-Danlos syndrome, so maybe it's not super uncommon that a doctor had only had a couple cases before
most doctors only seem to know about horses
I know it seems weird for a doctor to say they haven't seen many cases of EDS, but my primary actually is suspicious of me having it and mentioned he's only see one case of it that had been confirmed. And he's been practicing for almost 30 years, granted I am in a smaller town than what greys anatomy is supposed to be taking place in. But it is possible.
I was SO relieved to get a diagnosis. I wasn’t diagnosed until I was 19 and I felt crazy before that. The orthopedic doctors were even thinking about child abuse because I was in the orthopedic clinic so often!
As a Brit, the Casualty one is pretty good actually. It's kind of how we act in general. We use dark humour and stoicism because we have been brought up with it. I actually got my diagnosis because an A&E (Casualty or your ER) consultant noticed me pop my left thumb back in as they were treating me for a faint where I hit my head. The acute issue was addressed pretty quickly but then I got admitted to the hospital for further investigation based on that one little thumb relocation. I think it's different in the USA because of insurance only paying for the immediate care needs whilst the NHS has the freedom to take the underlying issue and admit for it. I've had multiple times of being in for one thing then admitted for another.
Great video! I look forward to seeing more accurate representation but also more varied representation. I have a mild case and don't get full dislocations and if I have POTS/gastroparesis it's very very mild. But still, I have a tremendous amount of pain. Also some of us use mobility aids like braces, canes, wheelchairs. We use tape. Things like that. It could be less dramatic and more practical too, like not playing sad music and making the patient look pitiful, and more dynamic reactions to treatment. Just some thoughts.
What kind of varied representation would you like? I'm a writer and might write a book about a 20-ish guy with hEDS + gastroparesis + POTS. I don't have these disorders myself, but I have other disabilities and plan on using my experience with those to help me portrait my character. (Like a past nano-gastric tube and not getting correct diagnosis for years.) I of course also research a lot and have followed several EDS-channels on YT for years to get everyday-life glimpses. What would you like to see in representation for EDS?
There is technically another episode of Greys Anatomy with a character with EDS. She had already been diagnosed and she was in early labor. It ended up not being much about her though because her older son was having seizures and had to have surgery so... but it’s still cool that they had another character.
yeah that IS cool!
I was just diagnosed with POTS, today after having an EDS diagnosis for years. So strange to see both EDS and POTS portrayed (especially together) on TV. I agree, Gray's Anatomy most aligned with my symptoms.
My shoulder barely hurts when it dislocates. It aches after. But most of the time the actually dislocation hurts for the three seconds it takes to move it into place.
I can relate to the characther so much when she got relived that her condition had a name as I have no idea what is wrong with my body as there is something clearly wrong my legs that hurt all the time
My stomach issues were one of the reasons I started restricting. I do in fact have anorexia, and anxiety, and more, so I always pushed my physical problems aside, because everyone did it too. I was always underweight growing up though, doctors assumed I had an ED since like seven, when I obviously didn’t.
I think EDS 3 will no longer be considered rare within a couple years
Why
I don’t really react to pain anymore. It would have to be very high beyond the pain I usually have for me to have a strong reaction to it. So I definitely think this is a reflection of not only individual pain tolerance but also very individual behavioral reactions to pain.
As for not feeling any pain, I find that accurate for my shoulders as well. They’ve been dislocating for so long that they slid in and out very easily. The only time it starts hurting is if it’s been dislocating in and out several times in a row, within quick succession. And I feel like that’s just the area around my shoulder joint gets very sore.
I think he " hardly encountered it " because he probably dismissed it in so many patients which probably happens irl 💀 ik that happens for some things like POTS for example, vs cardiologists
Oh my god I so get that: "It's got a name!" Thing.
My doctor once said to me, "Well, you don't WANT to have fibro, do you!"
I looked at him, so confused. "If it's the answer to all this pain, I want to know. I need to know WHAT it is."
Turns out it's probably EDS. We're starting the diagnostics process.
But I'm bedridden with pain, I've never seen anyone else that bad.
Love that Casualty portrayed EDS for us brits 🎉 my sister has EDS and I can say from our side the portrayal was accurate, my sister doesn't always feel pain when putting her shoulder or hip back in place. Sometimes she'll just say FINALLY then go about her business 🤣🤣
When my shoulder was popping out of the socket, I loudly screamed in excruciating pain for the few seconds until it rolled back into place. And then I finally had it surgically sewn back on. So I'm not relating to the "you get used to the pain" in this instance.
What was the name of your surgery to have it sewn back in? Both mine dislocate and unfortunately are painful.
I have POTS and I actually am listed as Autonomic failure because I can't control a lot of my body's function. My heart rate is always high. A good day it is 105 and a bad day is above 160; laying down or standing up.
I went through that with my Gastroparesis!!! I was sent to a doctor that scoped my throat. Woke up and the first thing he said to me was well you’re not a bulimic. I was shocked! I had no clue that’s what the scan was for. Then I had a barium scan. And that proved my Gastroparesis. What hell that was to throw up on my back laying down and being scanned.
I’m always popping my shoulders and hips back in. I have every single symptom on hEDS. But my drs won’t even think about researching me. I am waiting on the genetic clinic referral use to the umpteen surgeries I’ve had on bowels,kidneys, gynecological, hands etc. She’d rather give me opioids for the pain/ symptoms than get to the root of the problem. Health care may be free here in Canada, but finding a family dr is like finding a needle in a haystack. 🤦🏼♀️
Can definitely relate with putting limbs back in place after they’ve dislocated and it not hurting. I put my fingers and shoulders back all the time and I don’t even notice. My jaw on the other hand tend to be a bit sore. It locked once and it hurt to touch. And that’s on having hEDS
Omg love the new intro! Also, i didn’t realize that Grey’s Anatomy portrayed EDS!
thank you!!!!!
My hips and shoulders have dislocated my whole life.
I have POTS, Syncope, EDS, gastroparesis, hiatal hernia, and more.
i love this! is there enough movies out there that mention these conditions to do a part two?
Woah the fainted and fell on the shoulder and dislocated it happened to me like 2 weeks ago😂
The house one is postural orthostatic hypotension disorder
It is also more about standing and the blood pooling etc… he was in a sitting position with his legs up.
I’m sure she’s portraying that she felt it but is unresponsive to it because she’s familiar…
I can tell when my shoulder is out… but I can usually get it back in and while it hurts…. I probably react very differently than most and go about my day.
Hey hun my heart rate goes back to normal as soon as I lay down so yes the house thing does happen so please just be careful to not be so dismissive, we are not a monolith there are different presentations of the same illness. I am vEDS +POTS and a few other things so just be careful please.
It drives me crazy how House just always instantly diagnoses people. Like "Ok this patient that's barely been here for 10 minutes who I really haven't done many tests on or any at all at times, has a super rare disease!!!"
There's another house episode that has an EDS be patient. It's the wife of the school teacher that got blown up. They mysteriously link hoarding, agoraphobia, and miscarriages to EDS.
wow that sounds weird and inaccurate if they link those things to EDS
Izzy Kornblau I haven’t seen that full episode in awhile, but the connection of miscarriages is quite a common eds thing- I had 8, and anxiety - agoraphobia , as well as ocd, hoarding etc are all symptoms as well.
yeah, that episode really let me down. It basically implied that EDS patients are crazy (imagine that).
@@katkaplan3 Yes, but not the main complaints of HEDS patients. Pain and fatigue often start with puberty.
lmao I love the cat sitting in the wheelchair in the background
I keep getting random tachycardia even when I’m just laying down with like 0 reason to it. They scanned my heart and said it’s all fine and that random palpitations is natural for teenagers. But I’m literally laying down doing nothing most of the time or sitting down and I get a heart rate of about 100
Same. Yesterday I was laying down and my heart rate went from 94 which is my average resting heart rate down to 56 then shot up to 127 in a minute time span. My doctor actually ordered a heart monitor for me to wear because of this stuff.
Did you ever find answers? I'm 14, having random episodes of extremely high heart rate (140-190) accompanied with dizzyness, brain fog and mild chest pain, even while lying down. I've been fainting regularly and having significantly worse and more frequent symptoms apon standing. Plus worsening fatigue.
@@bbae-ld2ih They said I most likely have POTS which is Postural Orthostatic Tachycardia Syndrome which is basically where your heart rate gets super high when you stand and causes dizziness and fainting because it cant compensate for the blood pressure in your body. It definitely might be something to look into and see a doctor about and get multiple second opinions if you can as its quite rare to have it. It also sounds really stupid but I've found the more I monitor my heart rate the higher it gets as it makes me anxious to see it a little bit too high so only checking once in a while when i already feel unwell really helped to calm it down too. Good Luck on your journey and I'll be in these comments if you have any other things you're worried about :)
@@sachikawaii Thanks! Yeah, I'm scheduled for a tilt table soon, since I did the poor mans and my doctor said I most likely had it. It was quite hard getting the appointment due to issues with my parents, but I finally got it! The only thing about the possibility of POTS is it still doesn't explain why my heart rate gets so high even lying down sometimes :/. Thanks for responding, and I hope things get better for you :)
On the BBC show with the dislocated shoulder happening with no pain, that actually is possible lmao I ended up needing two MPFL knee reconstructions for my dislocating knee caps, but it got to a point where when I did Brazilian jiu-jitsu, my kneecap would come out of place during rolls (sparring), I'd tap out, relocate the knee, switch my knee brace from one leg to the other, and keep rolling. At a certain point the ligaments were so stretched out that it really didn't hurt to dislocate and relocate! Got the surgeries (sadly had to quit jiu jitsu... turns out a sport meant to break bones and dislocate joints isn't exactly eds friendly) but my kneecaps haven't dislocated since! Side note - if you're getting the surgery, REQUEST A NERVE BLOCK ENDOCATHETER. Healing time on the left knee without it was 4 months til I felt comfortable on stairs. With the nerve block? 2 weeks. The pain is excrutiating and if your brain doesn't have to feel that pain then it won't perpetuate that sensation the way so many of our brains like to do. No extreme fresh out of surgery pain = much quicker and easier to build back the muscle in physical therapy.
Firstly I would like to say a great big thank you finding ur videos on here has helped me so very much to understand this condition I've been diagnosed with also if u look for coronation street its a UK soap that has an actress in it that has heds in the program and also in her real life 😊
I dislocate my shoulders 30-40 times a day, and know that I'm past the point where the pain is debilitating, but it's still definitely there. I could not keep a straight face, especially if it was someone else relocating it for me.
Overall, I loved your review!! Best of luck with your knee :)
The House video is more orthostatic intolerance, which is a different disautonomy
I was 1 of 5 people with EDS my rheumatologist had but I grew up in a small/medium sided town and the other 4 were in a family
As a UK rainbow zebra, the Casualty representation was pretty accurate with UK doctors
It took 8 years to diagnose me . I was told continuously it was stress and then osteoporosis, fainting spells , collapsing aches , IBS,
amoung other things , one of my best days was getting diagnosed.
My pelvis came apart as well . So im on a wheelchair . Im constantly educating GPs on my condition .
I had a coworker to put my shoulder back into place after I popped it out of place just by cleaning a table at my work.
i have it but the worst it’s gotten physically wise is joints popping out of place like shoulders and knees, but i haven’t gone through the intense stuff with fainting and having to get tubes and stuff like that ;-;
My family have always said I have EDS, my mum and sister have it, and I had more symptoms of it than either of them. We meet going to doctor saying, we think it's this, we are willing to be proven wrong, can you test this? We even went to a rheumatologist, who said "you have more than enough symptoms to diagnose, but I believe its oversiagnosed, and I only diagnose it if you currently have heart complications." Now at 24, I'm finally back at the rheumatologist. For me it's more knees, I'm lucky that most times my joints pop themselves back, rarely I'll have to pop it back in myself.
its funny you posted this because yesterday i actually looked up all these episodes XD
thats great!
that's so funny!!!
Then the strange thing is watching reality television like Dance Moms (Brooke for sure!) and hearing dancers talk about frequent dislocations while also doing contortions in dances and knowing no one has ever picked up on the glaring symptoms. Like, c’mon girl….no, it isn’t normal to have to know how to just pop joints back in. Are dancers flexible because they’re dancers or are dancers just more prone to have EDS because they are hyper mobile?
My EDS is very minor but sometimes my knee dislocates for like a whole flipping day anytime I walk. It's so painful aaa
I think if house had him feel some dizziness after sitting up then passing out and waiting to take the pulse would have helped portray it better.
lol. No pain during a relocation sounds like heaven. One time I was in health class and I passed out from the pain. Thankfully me teacher knows about my issues so she got me some ice and let me chill for a while. She’s the best.
I was diagnosed with pots and have been starting to watch your videos and I just noticed that we are actually sorority sisters! ALAM from Missouri state!!!
house seems like its talking about another type of dysautonimia, postural hypotension, its less about the heart rate just mainly the bp
The answer part was incredible. This is why I am pursuing the diagnosis
The cat sitting in the wheelchair 🥺
7:37 I have been a victim of this and it is horrible.
People keep telling me that's it's wrong to hope for a diagnosis... but I totally understand the British woman. It's an answer. Is it a good diagnosis to get? No. Is it fun? Not at all. But it's an answer and I'm not crazy
Hi Izzy, my brother has "Cyst", "Most & Rest" also has "Cyst".
This was really interesting! Thank you for taking the time to track them down!
The disease they are actually describing in house is orthostatic hypotension I believe, not pots. Not sure where they got confused when they wrote that episode 🤷♀️
Some consider it a form of POTS and to be involved in HEDS
I remember that Greys Anotomy.....i sadly get excited when something i have shows up on the medical dramas.
I was recently diagnosed with POTS. They keep ask me if they have EDS. I said not that I know of. But watching this, it makes me wonder. I dislocate my jaw and pop it back in place a lot.
I feel like the House episode was actually describing orthostatic hypotension 🧐
You deserve more subscribers
I think Greys did good with both EDS and Chiari. I have both plus POTS and more!
I was just told by two of my medical providers within the past month or two that I'm only their second case of EDS in their career. Hmm, I highly doubt that. I only got diagnosed at age 48!
GPs rarely find it I've had to show books to gastroenterologist as well
@@TheMazinoz I still have to tell mine, all of my specialists actually.
Any words of wisdom? Pointers? Sources for good information?
My doctor isn't satisfied with firmly setting on hEDS as my diagnosis. On Monday he expressed concern that it may be one of the other variants. I have my paperwork for U of M, but they don't see hEDS patients. My doctor is frustrated.
I would welcome hearing your story and experiences. Age? Sex? Age at diagnosis?
Sorry for rambling. Its been a wee bit overwhelming, BUT it's also a relef of sorts feeling like I finally have the answer as to what's behind so many of my health issues. 49 (May)/female, mid Michigan.
@@summerdais325 "On Monday he expressed concern that it may be one of the other variants. I have my paperwork for U of M, but they don't see hEDS patients. My doctor is frustrated."
It's like a timewasting treadmill. "Inspire" forums for HEDS may be able to direct you to suitable geneticists, physios etc in your area if you ask? Also a lot of material on
www.ehlers-danlos.com for US patients and UK has a good site too
www.hypermobility.org with lots of information.
Public hospitals where I live in Australia refuse to see patients with HEDS and say need to see GPs. GPs know diddlysquat.
Have you seen a geneticist? Can test for other variants and rule out mitochondrial myopathies. At least my GP assisted me in ruling out mitochondrial myopathies via invitae.com testing. It is who a Childrens Hospital here in Brisbane use. My three nieces all have Glutaric Acidemia III a MM, which is why I wanted to be tested. MMs clinically look the same as HEDS.
Have you had full blood count, thyroid function tests and kidney, electrolyte levels done to rule out anaemias, etc as a cause of fatigue?
I've had two bouts of iron deficiency anaemia and low bone marrow stores.
I suspect gastroparesis or mild versions of it may lead to an inadequate diet / poor absorption. You could see if a B group vitamin supplement may help, +/- a good multivitamin and mineral. I found "Berocca" type tablets useful.
If you have low blood pressure, compression pantyhose fitted by an OT with at least 20mmHg compression, adding salt to cooking and food, an electrolyte tablet daily, THEN slowly increase exercise and a vibration platform may help, say 10mins x 2 daily, slowly increasing pace. Check with doctor that kidney function is ok first. Drinking water alone, just results in excess peeing. The electrolyte drink makes me nauseous so I sip it just before main meals. Or could sip slowly during day, but rinse mouth out afterwards as the citric acid can damage tooth enamel.
Physio exercises on YT are quite good. Especially ones for ballet dancers who are hypermobile. A search will turn up heaps.
"I would welcome hearing your story and experiences. Age? Sex? Age at diagnosis? "
Way too long and depressing at times. I'm now almost 70. Female too. Diagnosed at 34 after being misdiagnosed at 23 with RA. The worst is now behind me. But I wish I had taken POTS more seriously and not the last thing to do. I'm sure now it caused at least in part a lot of my other issues like migraine and "coathanger" pain, exercise intolerance and fatigue that wiped me out for days.
Oh two other things. Pacing activity and lying down or sitting down so important. I got over my fear of abuse for having to get a rollator during Covid especially when you couldn't sit down anywhere to rest in shopping malls. Helped my fatigue considerably. I also use a cane at times, a manual scooter and a two wheel electric scooter. I think I've started a trend around here with many seniors now opting for electric scooters or bikes for short trips to the store. What I use depends on amount of walking and where I'm going. I have two standard responses to anyone who abuses me or tries to make fun of me for using these important aids.
"Ignorant arsehole" if I'm making a getaway and they are still at cashier.
"Were you born stupid, rude and ignorant, or did your parents bring you up that way".
But most people don't give you a hard time. Just the odd sh..heads.
Some question me because they want the same!
I suggest if you can afford it to get better quality rollator, large wheels, fitted to you and that have brake cables covered to avoid snagging and damage to them.
"Sorry for rambling. Its been a wee bit overwhelming,"
I understand I found it the same, a bit devastating, hard to know what issues to address first!
TY! I'm not sure how I missed your reply. You have definitely given me some places to start!