The most unbelievable part of this is how invested the ER was in diagnosing her and that it didn't take 3 years of specialists for anyone to figure out what it was (or maybe it's better in the USA)
It’s really really not better in the USA. It’s really not. It took 10 years and dozens of specialists and tests and ER visits for me. And that 10 year timer didn’t even start until after a comorbid condition kicked everything into high gear at age 21. And my experience is not an uncommon one.
I totally agree that this wasnt a good representation as they portrayed it as something she now has to live with as opposed to something shes been dealing with her whole life. From the stories I've read, getting a diagnosis like this (as in when you're not looking for it) is a huge lightbulb moment where the reaction is usually "wait, this isn't something that everyone deals with?" And it brings relief to know your pain has been valid this while time
I dislocated my shoulder at my work just by wiping down a tall table. I have EDS and I suffer from my bladder causing me to need to go to the bathroom, I had to have my bladder repaired due to a automobile accident.
Initial assumption on what the reason to "not get sucked in" is they are in the ER. That is what a good doctor does. The er is generally there to keep people from dying in an emergency. If you aren't going to die asap they say to see your doctor. (BS but how it goes)
Very true. I’ve been multiple times recently, and was turned away even though I was in extreme pain and urinating blood, because they couldn’t determine a cause and well, I’m not dying. It does suck. #Chronicillnessproblems.
I had recurring UTIs and ER at QEII help me. First time temp, blood and white cells on toilet paper. They believe me when I said I had HEDS too. Injured hip doing physiotherapy exercise! I couldn't get into regular doctor so waited it out in ER for antibiotics when I explained.
Your comment at 7:15: the reason why he doesn’t want her being sucked in is because they are the ER department. You stop the patient from dying and then you move on. Further testing and diagnosing is supposed to be left to the patients GP and specialists. She’s not seeing enough patients per day because she’s spending too much time with each patient.
This was interesting! Thanks for doing this, Izzy, and pointing out both what was accurate and what was inaccurate in it. I think the strangest thing to understand was that the patient didn't have a bunch of light bulbs going off about her past. Probably most of us, once diagnosed, can suddenly make sense of many things that have happened to us. Other than dislocating her shoulder, she didn't seem to have a lot of symptoms she knew about, and that seemed unusual.
Sometimes it takes a while, and reading/ hearing about the comorbidities. Today I just learned from a video that the polyhadramnios in one pregnancy and complications in other pregnancies were possibly EDS. I've been developing a list of the comorbidities. A couple days ago learned about prolapsed organs -- don't know why that didn't come up earlier!! Also, soft teeth that yellow and deteriorate. Didn't figure out I probably got it from my father and not my mother until one of my kids mentioned how grandpa's fingers bent backwards. Then realized he probably got it from his mother. After she died, at the memorial family dinner, my grandfather mentioned how soft her skin was. And she had problems with "low blood sugar" (fatigue, dizziness). Also we all have this droopy eye thing going on.
@@andreawisner7358 I'm glad that you're able to start connecting the dots! Like you, I made a list of comorbidities (specifically ones I have). I believe my doctor added that to my medical files. A lot of my medical files went missing years ago, and I sometimes wonder if doctors would have connected the dots earlier if they had known my full medical history.
Because EDS is "so rare", I'm guessing the doctor hasn't seen a EDS patient before and what is taught it's the extreme cases. The whole spectrum concept should be taught instead of worst case scenarios. Plus she seems to be in a ER setting, which often doctors deal with many patients a day at the same time in long shifts and my feeling is they often lose that sense of what and how to talk to a patient, not their fault, but it's happens.
My favorite thing said by the doctor who originally diagnosed me was "Don't worry. When you hit menopause your symptoms will improve". I was 23 at the time.
@@mlapointejMe neither. Still 9/9 on Beighton scale, pain fatigue. Electrolyte drinks, salt give me ability to manage exercise though, also pacing and rollator.
17:02 as someone familiar with misconceptions about autism, Misinformed awareness is often worse than no awareness. People see a few stereotypical presentations, and they might forget that atypical presentations exist. It's happened with autism (hence, women are underdiagnosed, people are subject to hatred, sensory aspects are rarely legitimized), and I'm concerned it could happen with EDS.
Totally get your frustration about the way the “dr” went about it, and the oddness of the skin biopsy.... and really?! Tell MY body it’s not degenerative please! I realize it’s not for all. Can totally relate, as you know, to taking decades to get dx, and the frustration of no cure, but the relief of know WHAT you have, finally (for me) far outweighs the thought of no cure. I’m hybermobike type as well, but with huge/lots of classical skin involvement- tearing skin is soooo normal fir me, since I was a kid, bruising, thin fragile, soft skin etc, more than stretchy. Anyway, great review, never seen this show, glad they are bringing us into the media again even though it’s not entirely accurate portrayal..
My soon to be Mother in Law actually watched this episode when it aired and got SO excited, because she knew what it was , because I have it. 😂 I’m glad EDS is getting talked about!
I got really lucky with my EDS diagnosis. I was diagnosed with POTS within a month, and then after a couple months of personal research, my family and I concluded I probably had EDS as well. I was able to get my EDS diagnosis within a year or so, but even then doctors were going back and forth (as this was before my symptoms really got worse) If we hadn’t pushed for a diagnosis, I doubt I’d have one even years later
Yes! Thank you for mentioning the affect it can have on family! My sister was diagnosed at 16, but that doctor never informed my parents that it was hereditary. I was 30 before I even learned she had been diagnosed and we put all the pieces together to know that I had it too!
I kept hearing ‘a mess’ so I was happy that you went back to listen again when she was saying MS 😂 & I like that they mentioned that EDS usually takes years to diagnose!
For me my g-HSD is getting worse/more severe than it was before. Some thing are weird indeed she takes het diagnosis like she just developed it. Yes a diagnosis of EDS or HSD can hit you. But for me when I got diagnosed I thought this makes sence like I can't remember A day In my life that I didn't have (joint) pain. Dislocations where also a big part of my childhood
I have hypermobile type and I majorly struggle with muscle weakness. In the beginning I had all the signs of progressive MS but it was bi-lateral, so with that and MRIs they ruled it out...
i think it's weird how most of these media portrayals of eds include a patient coming in for something else & their doctors just spontaneously recognizing eds in their symptoms..... most people whose stories i've read had to personally fight for their diagnosis. i'm probably the closest to this situation, as i had a physical therapist recognize some of the symptoms & physical manifestations in me, but it still took over a year of me pursuing specialists in my area to get diagnosed after that initial pt visit where eds was suggested.
My diagnosis was done at a chiropractic college, I went in to be a part of a study on teens with back pain, several hour and a ridiculous amount of test later, they told me I had Spinabifida and EDS, and that I couldn't be a part of the study because I would skew the results. I was 16, very young to get diagnosed, but I had been symtomatic my whole life and seen so many doctors and none of them picked up on it. Just a couple of hours at a collage changed my life, but I didn't actually learn what the condition was or how bad mine is until two and half years ago, after having to quit several jobs in a row, because each one made me sicker and sicker until I could barely get out of bed to use the bathroom some days. Anyway. My point is that if someone knows what to look for and has some time to investigate, they can figure it out pretty fast!
I'm really glad your physical therapist was able to identify it for you, it's so wonderful to have PT aimed at the proper issues, so I hope she is a really helpful part of your health team 😍
I grew up with doctors that didn't really care. I didn't even know I had chronic problems with dislocations or why I'm always in pain and it's getting worse yearly until recently. Now I know I likely have a type of EDS. My parents also didn't care to get me properly treated and just trusted the dumb ass doctors. Granted my mom thought a child could become addicted to children's Tylenol and refused to give me any for a time meaning I was left in horrific pain with no pain relife for days.
I have the first EDS diagnosis in my family because nobody trust doctors, cause they don't listen, so most of us barely tell our doctors anything. Now a bunch of my relatives are going to their doctors to ask about EDS specifically with a large list of family history of these concerns.
Totally agree with you! Even though I don't have EDS, I have other chronic illnesses & the way this doc approached it & the way the patient took it just didn't seem realistic. Because often when we have chronic illnesses, we have years of dealing with debilitating symptoms before getting a diagnosis. It's nothing new to us. So yeah, we're not surprised at all and more likely we're frustrated at being so sick for so long and no one's finding out what's wrong. So when we get a diagnosis finally, it's often a HUGE relief and joy because we know we're not crazy and we know what it is that's been happening to our bodies. And it means we have some steps for how to manage it as well as connect with others who have it. It's often just a huge relief and weight off our shoulders when some doctor finally understands what's going on. I also have never once met a doctor who approached something the way this doc does. Most docs I've seen in 9 years are much more aloof & they deliver their thoughts in a matter of fact way. I wish this was presented more realistic of the patient experience of having approx. 5-15 years of being sick yet undiagnosed and dismissed by doctors before finding the right doctor who gives an accurate diagnosis. I think we really need to begin having more realistic shows about chronic illness & the medical system so we can have more honest conversations about this whole process and hopefully improve things for all of us. If we just tell overdramatic medical stories that exalt the doctors as superheroes and don't really share the abuses that happen in this process, we aren't gonna have a real conversation about what we need to change in this whole system & process. And I'd like to see us move into changing things for the better!! But it means we're gonna have to have honest conversations in our society and culture of the reality of how many chronic illness patients are treated in the medical world.
I am a 14 year old with hEDS and it was a recent diagnosis and your videos really help . I do agree about what you said about the episode clips inaccuracies and how som2 things that are said dont really make any sense.
@@IzzyKDNA yeah, as a nurse, it really had me cringing! Like you said, she has had this condition forever. There is no need for her to suddenly compensate. She should carry on with everything she is able to do, maybe look into physio, but don't start changing your whole life! And to totally skip over genetics lol
I agree so much with what you were saying, I get so mad whenever my mother tells family and such that suddenly I'm in all this pain and symptoms when There have been symptoms and problems since birth that I've been dealing with my whole life....people need to understand that just because it's a new diagnosis doesn't mean that they were suddenly living with it when a lot of us have been our entire lives.
Great reaction video! You brought up very good points about EDS. I have hEDS and was just diagnosed this October 2020 by the regional EDS specialist in my area. It was because of your older video "My Ehlers-Danlos story" that taught me about EDS and was a life changing moment for me. After watching your EDS story video, I got ahold of my doctor to get a referral sent to the EDS specialist right away. I cried tears of joy once I was diagnosed because all my life I didn't know what's wrong with me and doctors would say it was all in my head. I felt so lost and confused. I finally got my diagnosis at 41 years old. I can testify, at least for me, that EDS gets worse as you age. But at least now I'm building a care team to help support/manage my symptoms and I have most importantly VALIDATION and a community of fellow zebras :) Thank you so much Izzy. Your videos truly make a huge impact and changed my life for the better❤🦓
@IZZY! I have classical eds (col5a2) and I can't tell u how many sutures I've had rupture, wound dehissences and failed surgery I was blamed for being non compliant.. yah nope it was just my shitty collegen
The “doctor” here has a history of going deep into her diagnosis of patients and is why she has been reprimanded for it. Luckily this time it was worth it. I agree the patient has been living with it already, nothing new except she has a diagnosis or a name for what she’s been going through. It definitely could have been handled better in the show. This just makes things worse. The “doctor” would be good for us zebras it just sucks the way she gets treated for digging deep into diagnosis and then on EDS her approach.
She gave her the news like she was telling her she had a brain tumor and two months to live. I mean it's a serious condition obviously but the way they're discussing it was all wrong.
Great that it’s part of a public show! With the variation of symptoms from person to person, this is strange. I didn’t get diagnosed until 49 years old. I was relieved. There’s still so little medical help available at this point, it’s just treating symptoms as usual.
I went to the ER because I thought I had dislocated my hyoid bone. I was not diagnosed with EDS at the time, but it was suspected and I tried to make that known to the medical staff. My resting heart rate was 120 (what I now realize is likely POTS). I had said that it felt like something in my throat was "out of place" numerous times throughout my life, but I went to the ER on this particular day because I couldn't get it to go back in on my own. Even with all of that information and me specifically telling the doctor "I am suspected of having Ehlers-Danlos Syndrome," he still told me that he wasn't sure what could have caused it without trauma. And due to the bruises I was covered in (from EDS), I had to reiterate many times throughout the visit that I was safe in my home. In a sense, I am very thankful that they were so concerned about abuse because the next person in my shoes may not have been safe, but for this reason, I am very disbelieving that an ER doctor diagnosed EDS after a car accident.
I know this comment is was 2 years ago but it reminded me of my best friend, she has hEDS. She fell over and ruptured her spleen, and they started asking the same questions and saying the same things about trauma. I get why they ask but it's stupid not to learn how to distinguish between the two situations.
Oh and mine has totally degenerated over the last decade. I can't imagine what I'll be like in another decade, if I keep getting worse. I've definitely been told by eds trained(?) rheumatologists that it's degenerative.
It's rare that most of the medical professionals still don't understand 🙈 53 jears before diagnoses hEDS en dysautomia because my daughter (14) had her diagnoses hEDS en dysautomia. Thanks fore sharing, hopefully the ECHO is laud. Sorry my englisch writting is not the best 😉
That is a great way to bring awareness to EDS, Two and a half men did a episode for Epilepsy. I wish everyone would do their research and learn more about EDS, so they can make sure they are getting their facts correctly so they can help us than bring us more harm. I have Classical and I do heal slowly and when I had my gallbladder removed, my stitches popped open in certain areas and they had to fix it by using steristrips.
The skin biopsy may have been for genetic testing as well as histopathology. I'm a haematology research scientist and we often use skin biopsies for investigation of germline mutations in leukaemia.
I am not diagnosed with EDS but do have problems that could be EDS or something similar (caused me to do some research). I have done some research and a skin biopsy by what I researched is done after other testing so that is kinda strange but is sometimes done for sure.
This was great! I would love it if you reacted to some of the other shows that have featured EDS and POTS. Just a thought I had about the skin biopsy is she could be looking for neuropathy. hEDS has caused me to have severe neuropathy which has caused me far more pain and problems than any of my other associated conditions. the weakness may have made her think of this or just the EDS though alone. This is a punch biopsy or nerve biopsy, not skin but they could have got it wrong.
I actually follow the show and I have hEDS and the whole episode I was screaming that the patient had EDS and when they actually said it I was so surprised. And the doctor who was treating her had been dealing with issues with getting waaaaay to sucked into her work and passed out because of stress (and she has a heart problems hence her at the end saying how she's also frail) so that's why the other guy was a little iffy on her doing all this research but I was glad he did eventually get on board. And I also was confused by the skin biopsy and haven't even heard of that in EDS patients for diagnosis. The doctor's way about explaining it wasn't great or completely accurate either along with the fact how weird and inaccurate the patient's response was. When I was diagnosed I was thrilled, so I was kinda thrown off when she was all sad and felt like she had to go back home. I agree with you Izzy, she's already there and doing fine! As long as she's doing fine she should keep living her life the way she wants until one day if she can't anymore, the diagnosis shouldn't upend your whole life like that, it should help so you know what to do to stay better longer (with PT, medications, and stuff). Love the video btw ❤
Izzy, autoimmune vasculitis (wegeners vasculitis) is not common but possible and biopsies rule out some autoimmune disorders..id love to help with research
Your channel is amazing!!! If I didn’t watch you I wouldn’t know what to look out for. I was just diagnosed with pots after my pcp tried giving me the run around I got a referral to a cardiologist and within five minutes I had a diagnosis. Thank you so much!!!
I’m surprised they got as much right as they did about EDS here....given how impressively poorly they did with MS in just the one sentence they mentioned it. You cannot rule out MS with a urinalysis and CBC.
My stitches ripped open when I had my gallbladder surgery. I had a hole in my belly for awhile it would not heal. I've had such a rough time healing certain things. I'll add I have hEDS. I also dislocated my knee getting on an xray table and I didn't get my diagnosis till a few months ago lol. Looking back I'm like how did nobody ever think Ed's, I'm 37
Thanks so much for creating this video! When I watched this episode as it aired, there were a lot of things which bothered me as well. You were able to key in on those points as well. The skin biopsy was super weird, and the "EDS is not degenerative" statement bothered me a lot. It's as if they wanted to bring awareness of EDS, which is great; but their only research was randomly reading some medical journals, rather than the writers obtaining any sort of input from a knowledgeable medical professional as an adviser. This patient seemed like a bit of a hodgepodge of the various types, blended to form some sort of generic EDS vignette. In an early episode of Transplant, there was a young patient presenting with POTS/dysautonomia/fainting and anxiety that he had been dealing with for quite some time, which kept getting written off as psychogenic in nature. I had hoped that this patient would end up being diagnosed with EDS to explain their symptoms. However, that patient had blood tests run which came back as normal, and was written off as an "all in your head" thing. Unfortunately, this is the norm for many EDS patients. They should've run him through the Beighton. This patient hit so close to home that I actually wrote in to the show and complained. I mentioned that this is often how EDS patients present, get written off, and have their EDS diagnoses delayed by decades; and that the episode only reinforced the biases in the medical field which keep preventing EDS patients from being properly diagnosed and treated. In light of that episode, I'm thankful that the show at least attempted to address EDS and promote awareness of it.
Skin biopsy and a bunch of electro somethings tests, all very painful were done and my diagnosis was Hypermobilty syndrome and not eds. I was told it was a like a checklist of tests they go thru to determine how to treat you based on how far along you are with damage to the nervous system, if any. In my case they found damage in my neck that i wasn't aware was causing many of my symptoms and after treatment I'm so much better.
What do you do when you see a new Doctor and they doubt your established diagnosis? He actually said to me that my spine doesn’t look like EDS. I think he’s confusing hEDS with EDS VI Kyphoscoliosis. So frustrating.
That's one of the major problems which causes doctors to miss diagnosing hEDS. Most of the case studies and medical journal publications are of the rarer EDS types with the very pronounced and overly abnormal symptoms and presentations. Because of this, it gives doctors the incorrect assumption that all EDS cases have to look like those rarer EDS types with the extremely abnormal presentations. As a result, doctors aren't able to clearly see our hEDS.
Yeah I think to say it’s not degenerative is really misleading. Wear and tear adds up, arthritis adds up, surgeries and problems add up. Interviewing older people with EDS and you’ll hear that for sure.
I totally agree she’s had it for how long it’s not like she had something acute develop. And I love how someone in the Er discovered it as well and they even said it saved her decades of trying to figure out what is going on with her. But like you said her symptoms might now even be that bad so she might never even have had a diagnosis or sought out a diagnosis. I agree 100% she could have explained it to the patient much better!
I think she will need to make adjustments after the injuries and surgeries so that bit is accurate... also she may be doing things that are going to cause issues down the line without knowing, so seeing an OT to check up on anything is a good idea. E.g. I caused permanent damage to my finger and thumb from holding pens and pencils in a way that stressed and over-extended the joints for 20+ years. The way I did/do a lot of things has caused chronic pain in certain joints... so yeah she needs to make preventative adjustments too.
i’ve watched the show! dr. leblanc tends to be overinvolved with patients in the er even though doctors there don’t have time to deal with every part of the medical process. this eds case is where that propensity shines but there have been incidents in other episodes where she won’t let stuff go when the patient’s general physician should deal with it.
2 out of the 3 times i had stiches i tore most of them and i just kinda suffered through cause my skin breaks easy is muscle pain common? i was told that because i experience muscle pain it probably isnt EDS but after i insisted theyre looking at it anyway
It really bothered me that they didn't tell her what type she was diagnosed with, like you said. That can make such a huge difference and I think is so important to know in bringing awareness. Maybe even mentioning hEDS is the most common but only type without a genetic marker (as of now)
Skin Biopsy's can be useful, I got one. Even if they're not testing for EDS specifically, they can test for EDS linked problems like small fiber neuropathy. Kills two birds with one stone, New diagnosis, and more circumstantial evidence for EDS.
Hey 😊👋🏼 So I'm 27, born and raised in Hungary but currently living in Germany I actually never had full dislocations but subluxation in only 1 joint i know but that got "fixed" with an operation 10 years ago so I have no submissions standing everywhere in mid diagnosis (which I'm not sure is 100% accurate but whatever) So I didn't quite fit for the hEDS criteria (missed some minor ones but had some minor for cEDS for that) but my geneticist wasn't sure about vEDS either - so there will be a genetic test for vEDS (and because public healthcare pays for the whole panel for cEDS as well), but first the skin biopsy should be done - at least that's the recommendation (we'll see if public healthcare will pay for that, if not that would cost 3-400€) So now I have the diagnosis for HSD but luckily I found a great orthopedic doctor who believes me, recommended genetic testing and is willing on working on my joint problems one joint at the time (other doctors were like "yeah you have pain cause your joint isn't really stable so let's move on" or "we can't see anything on ultrasound/X-ray so you there's no reason for pain" and a rheumatologist who was the first person telling me I'm hypermobile t told me "I should feel lucky that I don't scream from pain by every movement or every time someone touches me")
Hey! It's interesting to hear that a skin biopsy would come before genetic testing. In the US, we can get the EDS panel for $200 without insurance. Hopefully these tests and prices will come to other countries soon, as genetic testing is more expensive in other countries which SUCKS
@@IzzyKDNA well the geneticist recommended it this way, because there's no genetic test for hEDS yet, so in case the test comes back negative for vEDS/cEDS/clEDS the insurance definitely won't pay for the skin biopsy (as far as I know there's like only one clinic in Germany responsible for this kind of testing, this is the reason why it's so expensive and not always covered by the insurance unlike the genetic testing)
Skin biopsies are common among individuals with EDS. There is high correlation bw EDS and small fiber neuropathy (SFN). Biopsies are generally done on ankle and hip.
Way back in the day, they used to do skin biopsies to diagnose cEDS and vEDS. My sister had one for a different reason, but he sample totally fell apart. I have some muscle weakness and I don’t have the other types of EDS...hypotonia is common with us. I actually might have Loews-Dietz but I was diagnosed with EDS in 2007. Also, MS isn’t diagnosed via blood and urine tests haha
Thanks for making this video!! Glad I'm not the only one that thought there were a couple issues with the way they talked about EDS. I really like the show, but got upset by the next episode (13) because they misrepresented a service dog as a therapy dog for a boy with CF.
Actually, for me they did a skin biopsy when they first thought I might have EDS and they found an abnormality (after the genetic test it turned out I don't have EDS but something else). But they did it as a start to get a diagnosis and to be able to get further testing done.
I was diagnosed with Classical and I have actually had all the same issues she did. I also have muscle pain, muscle spasms, tears and weakness. I only got diagnosed 2 years ago and I'm 48. I've never had genetic testing or biopsy. I wonder if I should get testing for confirmation.
Nearly 35 years from first incident to diagnosis (still pending) for me. I think milder cases take longer than those with more severe symptoms, as it's just less obvious, & doctors really need obvious to even consider it. I have quite literally sat in doctors' offices with a long list of symptoms and co-morbidities & said "No one has this many random weird conditions...there must be some underlying condition causing it all, maybe at a molecular level? Maybe I don't make a protein or something? Surely something connects all these???" Seriously, I distinctly recall using the words 'connect' & 'connection' on multiple occasions, & still nothing....for 35 YEARS!!! argh. ~sigh~
Oh ok I went back and looked at it, it was from 2013 but was recently posted on OH T.W.I.S.T. ‘S Twitter :) She always has some really good links and info. Love your channel Izzy! I think I first found you a little over a year ago. I finally have a somewhat official hEDS diagnosis from a disappointing rheumatologist appt that at least led me to a geneticist appt this coming January lol. Tulane in New Orleans just opened a hypermobile/Ehlers-Danlos clinic attached to their ortho dept, but it’s only open two Mondays a month and is already booked through May. It’s kind of a big deal, bc apparently doctors down here are kind of ignorant about EDS.
I actually have a friend and her sister that were diagnosed by a dermatologist via skin biopsy. They were said to have heds but havent seen a genetic doc so who knows what type it actually is.
I’m not going to be as hyper mobile as a younger person or as I was as a young child, I am 48 and my body has gotten stiffer now. I have worse pain now than I did back then, I am a high risk for falls more now than I was then. I will injure myself now than I did back then. Ugh, maybe people need to do their research so they can get the facts right. I was in a accident back in 2004 and I had my bladder to rupture, my Aorta was torn and my lung was collapsed. Nope, not many people or doctors know what EDS is but I found something from the EDS foundation here in TN. That I hope that I can help change that! I have Classical EDS and I have bruising easy, my bladder got ruptured and many other complications due to both of them.
I’ve had three surgeries with stitches and one with staples. 3/4 of those instances, my body completely rejected the stitches/staples, and took months to heal. Ugh #EDSprobs
If you talk to my Drs they definitely believe EDS is degenerative. I know it effects everyone differently but we all worsen on some level as we age. In less then two years I went from having no chairi malformation to having a 9mm herniation (I don't work or had any accidents or anything). So definitely I believe EDS is degenerative. You can even look at the level of degeneration on my spine as well in just two years (Its unbelievable).
Exactly! I'm not diagnosed yet but I strongly believe I have some form of EDS and I've absolutely gotten worse with age. I've just recently strained the muscle in my back for no reason when that's never happened to me before. My pain, joint instability, GI issues, everything is progressing with age. It could get better but that doesn't mean it won't have lasting damage.
I think they did the biopsy because its fast and dna test is months?? I say Éhlers danlos, you say èhlers danlos and my doctors said Ehler danlò like its a french word and like i said it wrong....i still dont know whats right 🙄 im from holland.
EDS is totally degenerative. My knees barely function in the cold and my hands ache constantly thanks to arthritis. I dread them getting worse or it spreading to other joints.
Have you watched the episode of The Good Doctor that has Elher-Danlos Syndrome in it? I would be interested to hear your opinion on that episode ^-^ S3 E16 is the one where it features one of the variations of EDS :)
Disclaimer that I'm not sure whether I have EDS or HSD yet, still going through the diagnosis process, but it's likely I have one or the other. I've had a lot of joint pain and other symptoms since I was a child, but I definitely feel like everything got worse in my mid-20's (including developing Osteoarthritis). So I agree that there seems to be a degenerative aspect to conditions like these. I also felt the dialogue about having the diagnosis forever was too dramatic. I've been getting diagnoses that I will have "forever" since I was a child but the doctors never let me think it was the end of the world and it never really felt that way. I don't want to minimize the range of emotions one can experience during a diagnosis, especially if your doctor sucks at explaining it OR if it's a painful condition...but like, the dialogue just felt really off to me, from my experiences and from what I've heard from other people with EDS and similar chronic illnesses. So I agree with your comments on that part of it too. Great video!
i don’t have eds but i have other chronic illnesses. i agree her approach was not as nuanced or compassionate as it should be. i do think though, that you start to notice more of your symptoms once you know more about the condition. so, based on my experience, it makes sense for dr. leblanc to feel sorry that eds may be a barrier for the patient’s plans
Maybe she was saying that because she's already had symptoms, and she's just had a traumatic injury. I mean, her shoulder will probably get worse. And bladder pain can be intense. I agree that there could've been more info given, to educate watchers, but for a TV show? Eh, I guess I don't believe they'd think it was interesting enough, which shows that the patients aren't conning back. Or they'd get more developed.
Just had dental surgery 3 weeks back. Removed nearly all my teeth. about quarter of the stitches fell out within 48 hours. Normally I should have gotten fitted for dentures yesterday. They are thinking 3 more weeks before they will even try again. This video is just another horrible representation of disorders. While in medical speak EDS may not be degenerative in reality for the individual having it might as well be called that since the overall effects absolutely get worse with age. They went too overboard to make this dramatic for the audience and seriously overplayed the EDS card as a result.
Totally can relate to your dental woes, I need to get the rest of mine removed- have a partial plate now... just been putting it off since the pandemic, and fear of healing issues.
@@katkaplan3 For me was the pain that made me not only put it off but not see a dentist for decades. Locals do not work very well for me. Never have. And every dental procedure I have had with just a local left me screaming in pain in the dental chair. Had to find a charity organization to pay for anesthesia. And they did it because I have autism not because anyone recognized I may have hEDS. Still fighting for a diagnosis or alternative explanation.
I think the skin biopsy thing is very controversial. There is only a small chance it would be positive in heds patients. Sadly the doctor I will go to to get potentially diagnosed wants to do one too (after the other normal testing) maybe it’s to have another (possible) confirmation but I guess it’s also to make money lol.
The most unbelievable part of this is how invested the ER was in diagnosing her and that it didn't take 3 years of specialists for anyone to figure out what it was (or maybe it's better in the USA)
It’s really really not better in the USA. It’s really not. It took 10 years and dozens of specialists and tests and ER visits for me. And that 10 year timer didn’t even start until after a comorbid condition kicked everything into high gear at age 21.
And my experience is not an uncommon one.
Trust me, it's not. I just spent 2 months fighting with insurance over a cheek swab test.
yep
Took u only 3 years .?
This is Canadian show, not US.
I totally agree that this wasnt a good representation as they portrayed it as something she now has to live with as opposed to something shes been dealing with her whole life. From the stories I've read, getting a diagnosis like this (as in when you're not looking for it) is a huge lightbulb moment where the reaction is usually "wait, this isn't something that everyone deals with?" And it brings relief to know your pain has been valid this while time
PERFECTLY put 💪
Agreed!
Agreed
The line about dislocation of the shoulder while reaching into a crawl space made me laugh cause that's exactly how I dislocated my shoulder last year
lol
I dislocated my shoulder at my work just by wiping down a tall table. I have EDS and I suffer from my bladder causing me to need to go to the bathroom, I had to have my bladder repaired due to a automobile accident.
Have my skin tears easily and I heal slowly, I have to be careful not to bust my stitches open when I have a operation!
Initial assumption on what the reason to "not get sucked in" is they are in the ER. That is what a good doctor does. The er is generally there to keep people from dying in an emergency. If you aren't going to die asap they say to see your doctor. (BS but how it goes)
Very true. I’ve been multiple times recently, and was turned away even though I was in extreme pain and urinating blood, because they couldn’t determine a cause and well, I’m not dying. It does suck. #Chronicillnessproblems.
I had recurring UTIs and ER at QEII help me. First time temp, blood and white cells on toilet paper. They believe me when I said I had HEDS too. Injured hip doing physiotherapy exercise! I couldn't get into regular doctor so waited it out in ER for antibiotics when I explained.
Your comment at 7:15: the reason why he doesn’t want her being sucked in is because they are the ER department. You stop the patient from dying and then you move on. Further testing and diagnosing is supposed to be left to the patients GP and specialists. She’s not seeing enough patients per day because she’s spending too much time with each patient.
My sister dislocated a rib when we went over a bump on the school bus one time. I was sitting next to her when it happened and we were both like wtf??
I was just diagnosed with EDS. Your videos remind me of my life and they make me feel less alone in this. Thank you so much.
I'm so glad!
You're definitely not alone, there are so many of us out there *gentle hugs pending consent*
This was interesting! Thanks for doing this, Izzy, and pointing out both what was accurate and what was inaccurate in it. I think the strangest thing to understand was that the patient didn't have a bunch of light bulbs going off about her past. Probably most of us, once diagnosed, can suddenly make sense of many things that have happened to us. Other than dislocating her shoulder, she didn't seem to have a lot of symptoms she knew about, and that seemed unusual.
SUCH a great point! now that you say it, i completely agree
Sometimes it takes a while, and reading/ hearing about the comorbidities. Today I just learned from a video that the polyhadramnios in one pregnancy and complications in other pregnancies were possibly EDS. I've been developing a list of the comorbidities. A couple days ago learned about prolapsed organs -- don't know why that didn't come up earlier!! Also, soft teeth that yellow and deteriorate. Didn't figure out I probably got it from my father and not my mother until one of my kids mentioned how grandpa's fingers bent backwards. Then realized he probably got it from his mother. After she died, at the memorial family dinner, my grandfather mentioned how soft her skin was. And she had problems with "low blood sugar" (fatigue, dizziness). Also we all have this droopy eye thing going on.
@@IzzyKDNA yes!!
@@andreawisner7358 I'm glad that you're able to start connecting the dots! Like you, I made a list of comorbidities (specifically ones I have). I believe my doctor added that to my medical files. A lot of my medical files went missing years ago, and I sometimes wonder if doctors would have connected the dots earlier if they had known my full medical history.
@@andreawisner7358I'm at the stage where every time I get some new diagnosis I google to see if it could be HEDS related.
Because EDS is "so rare", I'm guessing the doctor hasn't seen a EDS patient before and what is taught it's the extreme cases. The whole spectrum concept should be taught instead of worst case scenarios. Plus she seems to be in a ER setting, which often doctors deal with many patients a day at the same time in long shifts and my feeling is they often lose that sense of what and how to talk to a patient, not their fault, but it's happens.
My favorite thing said by the doctor who originally diagnosed me was "Don't worry. When you hit menopause your symptoms will improve". I was 23 at the time.
😳
😑 certainly not how that has worked with my family members.
@@mlapointejMe neither. Still 9/9 on Beighton scale, pain fatigue. Electrolyte drinks, salt give me ability to manage exercise though, also pacing and rollator.
17:02 as someone familiar with misconceptions about autism,
Misinformed awareness is often worse than no awareness. People see a few stereotypical presentations, and they might forget that atypical presentations exist. It's happened with autism (hence, women are underdiagnosed, people are subject to hatred, sensory aspects are rarely legitimized), and I'm concerned it could happen with EDS.
I completely agree
women are underdiagnosed not men
Totally get your frustration about the way the “dr” went about it, and the oddness of the skin biopsy.... and really?! Tell MY body it’s not degenerative please! I realize it’s not for all. Can totally relate, as you know, to taking decades to get dx, and the frustration of no cure, but the relief of know WHAT you have, finally (for me) far outweighs the thought of no cure. I’m hybermobike type as well, but with huge/lots of classical skin involvement- tearing skin is soooo normal fir me, since I was a kid, bruising, thin fragile, soft skin etc, more than stretchy. Anyway, great review, never seen this show, glad they are bringing us into the media again even though it’s not entirely accurate portrayal..
My soon to be Mother in Law actually watched this episode when it aired and got SO excited, because she knew what it was , because I have it. 😂 I’m glad EDS is getting talked about!
I got really lucky with my EDS diagnosis. I was diagnosed with POTS within a month, and then after a couple months of personal research, my family and I concluded I probably had EDS as well.
I was able to get my EDS diagnosis within a year or so, but even then doctors were going back and forth (as this was before my symptoms really got worse)
If we hadn’t pushed for a diagnosis, I doubt I’d have one even years later
Yes! Thank you for mentioning the affect it can have on family! My sister was diagnosed at 16, but that doctor never informed my parents that it was hereditary. I was 30 before I even learned she had been diagnosed and we put all the pieces together to know that I had it too!
I kept hearing ‘a mess’ so I was happy that you went back to listen again when she was saying MS 😂 & I like that they mentioned that EDS usually takes years to diagnose!
Yeah I’m not sure about ‘not degenerative’ I think it’s different for different people
For me my g-HSD is getting worse/more severe than it was before. Some thing are weird indeed she takes het diagnosis like she just developed it. Yes a diagnosis of EDS or HSD can hit you. But for me when I got diagnosed I thought this makes sence like I can't remember A day In my life that I didn't have (joint) pain. Dislocations where also a big part of my childhood
The joint pain for me started at 23. But everyone is different.
I have hypermobile type and I majorly struggle with muscle weakness. In the beginning I had all the signs of progressive MS but it was bi-lateral, so with that and MRIs they ruled it out...
i think it's weird how most of these media portrayals of eds include a patient coming in for something else & their doctors just spontaneously recognizing eds in their symptoms..... most people whose stories i've read had to personally fight for their diagnosis. i'm probably the closest to this situation, as i had a physical therapist recognize some of the symptoms & physical manifestations in me, but it still took over a year of me pursuing specialists in my area to get diagnosed after that initial pt visit where eds was suggested.
My diagnosis was done at a chiropractic college, I went in to be a part of a study on teens with back pain, several hour and a ridiculous amount of test later, they told me I had Spinabifida and EDS, and that I couldn't be a part of the study because I would skew the results. I was 16, very young to get diagnosed, but I had been symtomatic my whole life and seen so many doctors and none of them picked up on it. Just a couple of hours at a collage changed my life, but I didn't actually learn what the condition was or how bad mine is until two and half years ago, after having to quit several jobs in a row, because each one made me sicker and sicker until I could barely get out of bed to use the bathroom some days. Anyway. My point is that if someone knows what to look for and has some time to investigate, they can figure it out pretty fast!
I'm really glad your physical therapist was able to identify it for you, it's so wonderful to have PT aimed at the proper issues, so I hope she is a really helpful part of your health team 😍
I grew up with doctors that didn't really care. I didn't even know I had chronic problems with dislocations or why I'm always in pain and it's getting worse yearly until recently. Now I know I likely have a type of EDS. My parents also didn't care to get me properly treated and just trusted the dumb ass doctors.
Granted my mom thought a child could become addicted to children's Tylenol and refused to give me any for a time meaning I was left in horrific pain with no pain relife for days.
I'm sorry; that's awful! I think a lot of us struggle with unsympathetic parents.
I have the first EDS diagnosis in my family because nobody trust doctors, cause they don't listen, so most of us barely tell our doctors anything. Now a bunch of my relatives are going to their doctors to ask about EDS specifically with a large list of family history of these concerns.
Was literally going to say you look Hermione here 😂😂😂
RIGHT?!
Hi Georgina!
Totally agree with you! Even though I don't have EDS, I have other chronic illnesses & the way this doc approached it & the way the patient took it just didn't seem realistic. Because often when we have chronic illnesses, we have years of dealing with debilitating symptoms before getting a diagnosis. It's nothing new to us. So yeah, we're not surprised at all and more likely we're frustrated at being so sick for so long and no one's finding out what's wrong. So when we get a diagnosis finally, it's often a HUGE relief and joy because we know we're not crazy and we know what it is that's been happening to our bodies. And it means we have some steps for how to manage it as well as connect with others who have it. It's often just a huge relief and weight off our shoulders when some doctor finally understands what's going on. I also have never once met a doctor who approached something the way this doc does. Most docs I've seen in 9 years are much more aloof & they deliver their thoughts in a matter of fact way.
I wish this was presented more realistic of the patient experience of having approx. 5-15 years of being sick yet undiagnosed and dismissed by doctors before finding the right doctor who gives an accurate diagnosis. I think we really need to begin having more realistic shows about chronic illness & the medical system so we can have more honest conversations about this whole process and hopefully improve things for all of us.
If we just tell overdramatic medical stories that exalt the doctors as superheroes and don't really share the abuses that happen in this process, we aren't gonna have a real conversation about what we need to change in this whole system & process. And I'd like to see us move into changing things for the better!! But it means we're gonna have to have honest conversations in our society and culture of the reality of how many chronic illness patients are treated in the medical world.
This video is literally me while originally watching this episode. I even thought “Izzy should review this episode”
I am a 14 year old with hEDS and it was a recent diagnosis and your videos really help . I do agree about what you said about the episode clips inaccuracies and how som2 things that are said dont really make any sense.
Omg you're so right. She clearly cares but damn she told her in the worst way!
Right?! so glad it's not just me haha
@@IzzyKDNA yeah, as a nurse, it really had me cringing! Like you said, she has had this condition forever. There is no need for her to suddenly compensate. She should carry on with everything she is able to do, maybe look into physio, but don't start changing your whole life! And to totally skip over genetics lol
"You suddenly have EDS, now your life is going to be awful" that's the vibe I got from this hahaha
I agree so much with what you were saying, I get so mad whenever my mother tells family and such that suddenly I'm in all this pain and symptoms when There have been symptoms and problems since birth that I've been dealing with my whole life....people need to understand that just because it's a new diagnosis doesn't mean that they were suddenly living with it when a lot of us have been our entire lives.
Great reaction video! You brought up very good points about EDS. I have hEDS and was just diagnosed this October 2020 by the regional EDS specialist in my area. It was because of your older video "My Ehlers-Danlos story" that taught me about EDS and was a life changing moment for me. After watching your EDS story video, I got ahold of my doctor to get a referral sent to the EDS specialist right away. I cried tears of joy once I was diagnosed because all my life I didn't know what's wrong with me and doctors would say it was all in my head. I felt so lost and confused. I finally got my diagnosis at 41 years old. I can testify, at least for me, that EDS gets worse as you age. But at least now I'm building a care team to help support/manage my symptoms and I have most importantly VALIDATION and a community of fellow zebras :) Thank you so much Izzy. Your videos truly make a huge impact and changed my life for the better❤🦓
This is so amazing and means the world to me. I'm so happy that you have a diagnosis and finally know what's wrong!
Thank you! ❤❤
@IZZY! I have classical eds (col5a2) and I can't tell u how many sutures I've had rupture, wound dehissences and failed surgery I was blamed for being non compliant.. yah nope it was just my shitty collegen
The way I explain hEDS not being degenerative technically is by a
Saying it’s cumulative. As more injuries happen, etc things pile on and get worse
The “doctor” here has a history of going deep into her diagnosis of patients and is why she has been reprimanded for it. Luckily this time it was worth it. I agree the patient has been living with it already, nothing new except she has a diagnosis or a name for what she’s been going through. It definitely could have been handled better in the show. This just makes things worse. The “doctor” would be good for us zebras it just sucks the way she gets treated for digging deep into diagnosis and then on EDS her approach.
She gave her the news like she was telling her she had a brain tumor and two months to live. I mean it's a serious condition obviously but the way they're discussing it was all wrong.
I didn’t know this existed!! Gonna watch this show now. Thank you for another great video :)
I've never watched this show. I'm guessing the diagnosing person is doing her residency.
I experience muscle weakness regularly, and they thought I had MS for years; regular MRIs to check for lesions. I'm diagnosed hEDS
Great that it’s part of a public show! With the variation of symptoms from person to person, this is strange. I didn’t get diagnosed until 49 years old. I was relieved. There’s still so little medical help available at this point, it’s just treating symptoms as usual.
I went to the ER because I thought I had dislocated my hyoid bone. I was not diagnosed with EDS at the time, but it was suspected and I tried to make that known to the medical staff. My resting heart rate was 120 (what I now realize is likely POTS). I had said that it felt like something in my throat was "out of place" numerous times throughout my life, but I went to the ER on this particular day because I couldn't get it to go back in on my own. Even with all of that information and me specifically telling the doctor "I am suspected of having Ehlers-Danlos Syndrome," he still told me that he wasn't sure what could have caused it without trauma. And due to the bruises I was covered in (from EDS), I had to reiterate many times throughout the visit that I was safe in my home. In a sense, I am very thankful that they were so concerned about abuse because the next person in my shoes may not have been safe, but for this reason, I am very disbelieving that an ER doctor diagnosed EDS after a car accident.
I know this comment is was 2 years ago but it reminded me of my best friend, she has hEDS. She fell over and ruptured her spleen, and they started asking the same questions and saying the same things about trauma. I get why they ask but it's stupid not to learn how to distinguish between the two situations.
Oh and mine has totally degenerated over the last decade. I can't imagine what I'll be like in another decade, if I keep getting worse. I've definitely been told by eds trained(?) rheumatologists that it's degenerative.
It's rare that most of the medical professionals still don't understand 🙈 53 jears before diagnoses hEDS en dysautomia because my daughter (14) had her diagnoses hEDS en dysautomia. Thanks fore sharing, hopefully the ECHO is laud. Sorry my englisch writting is not the best 😉
That is a great way to bring awareness to EDS, Two and a half men did a episode for Epilepsy. I wish everyone would do their research and learn more about EDS, so they can make sure they are getting their facts correctly so they can help us than bring us more harm. I have Classical and I do heal slowly and when I had my gallbladder removed, my stitches popped open in certain areas and they had to fix it by using steristrips.
The skin biopsy may have been for genetic testing as well as histopathology. I'm a haematology research scientist and we often use skin biopsies for investigation of germline mutations in leukaemia.
I absolutely loved this episode!
I am not diagnosed with EDS but do have problems that could be EDS or something similar (caused me to do some research). I have done some research and a skin biopsy by what I researched is done after other testing so that is kinda strange but is sometimes done for sure.
This was great! I would love it if you reacted to some of the other shows that have featured EDS and POTS. Just a thought I had about the skin biopsy is she could be looking for neuropathy. hEDS has caused me to have severe neuropathy which has caused me far more pain and problems than any of my other associated conditions. the weakness may have made her think of this or just the EDS though alone. This is a punch biopsy or nerve biopsy, not skin but they could have got it wrong.
It does get worse, like a rubber band that loses its elasticity. Degenerative.
I actually follow the show and I have hEDS and the whole episode I was screaming that the patient had EDS and when they actually said it I was so surprised. And the doctor who was treating her had been dealing with issues with getting waaaaay to sucked into her work and passed out because of stress (and she has a heart problems hence her at the end saying how she's also frail) so that's why the other guy was a little iffy on her doing all this research but I was glad he did eventually get on board. And I also was confused by the skin biopsy and haven't even heard of that in EDS patients for diagnosis. The doctor's way about explaining it wasn't great or completely accurate either along with the fact how weird and inaccurate the patient's response was. When I was diagnosed I was thrilled, so I was kinda thrown off when she was all sad and felt like she had to go back home. I agree with you Izzy, she's already there and doing fine! As long as she's doing fine she should keep living her life the way she wants until one day if she can't anymore, the diagnosis shouldn't upend your whole life like that, it should help so you know what to do to stay better longer (with PT, medications, and stuff). Love the video btw ❤
Izzy, autoimmune vasculitis (wegeners vasculitis) is not common but possible and biopsies rule out some autoimmune disorders..id love to help with research
Your channel is amazing!!! If I didn’t watch you I wouldn’t know what to look out for. I was just diagnosed with pots after my pcp tried giving me the run around I got a referral to a cardiologist and within five minutes I had a diagnosis. Thank you so much!!!
I’m surprised they got as much right as they did about EDS here....given how impressively poorly they did with MS in just the one sentence they mentioned it. You cannot rule out MS with a urinalysis and CBC.
My stitches ripped open when I had my gallbladder surgery. I had a hole in my belly for awhile it would not heal. I've had such a rough time healing certain things. I'll add I have hEDS. I also dislocated my knee getting on an xray table and I didn't get my diagnosis till a few months ago lol. Looking back I'm like how did nobody ever think Ed's, I'm 37
So excited I recommended this !!
YAY! Literally the SECOND it aired i got like 8 messages and you were one!
@@IzzyKDNA haha I guess we all know exactly who we wanna tell when we see an episode on Eds 😂💕
@@victoriaandrassy6051 Yeah! LOL! I've been a Transplant fan, and immediately posted a comment to Izzy after this episode as well. :)
Thanks so much for creating this video! When I watched this episode as it aired, there were a lot of things which bothered me as well. You were able to key in on those points as well. The skin biopsy was super weird, and the "EDS is not degenerative" statement bothered me a lot. It's as if they wanted to bring awareness of EDS, which is great; but their only research was randomly reading some medical journals, rather than the writers obtaining any sort of input from a knowledgeable medical professional as an adviser. This patient seemed like a bit of a hodgepodge of the various types, blended to form some sort of generic EDS vignette.
In an early episode of Transplant, there was a young patient presenting with POTS/dysautonomia/fainting and anxiety that he had been dealing with for quite some time, which kept getting written off as psychogenic in nature. I had hoped that this patient would end up being diagnosed with EDS to explain their symptoms. However, that patient had blood tests run which came back as normal, and was written off as an "all in your head" thing. Unfortunately, this is the norm for many EDS patients. They should've run him through the Beighton. This patient hit so close to home that I actually wrote in to the show and complained. I mentioned that this is often how EDS patients present, get written off, and have their EDS diagnoses delayed by decades; and that the episode only reinforced the biases in the medical field which keep preventing EDS patients from being properly diagnosed and treated. In light of that episode, I'm thankful that the show at least attempted to address EDS and promote awareness of it.
Skin biopsy and a bunch of electro somethings tests, all very painful were done and my diagnosis was Hypermobilty syndrome and not eds. I was told it was a like a checklist of tests they go thru to determine how to treat you based on how far along you are with damage to the nervous system, if any. In my case they found damage in my neck that i wasn't aware was causing many of my symptoms and after treatment I'm so much better.
My skin is so fragile with my EDS ): my mouth often even bleeds just from eating
What do you do when you see a new Doctor and they doubt your established diagnosis? He actually said to me that my spine doesn’t look like EDS. I think he’s confusing hEDS with EDS VI Kyphoscoliosis. So frustrating.
in that circumstance there's really nothing you can do. it's the doctor's lack of knowledge. im sorry!
That's one of the major problems which causes doctors to miss diagnosing hEDS. Most of the case studies and medical journal publications are of the rarer EDS types with the very pronounced and overly abnormal symptoms and presentations. Because of this, it gives doctors the incorrect assumption that all EDS cases have to look like those rarer EDS types with the extremely abnormal presentations. As a result, doctors aren't able to clearly see our hEDS.
Yeah I think to say it’s not degenerative is really misleading. Wear and tear adds up, arthritis adds up, surgeries and problems add up. Interviewing older people with EDS and you’ll hear that for sure.
I totally agree she’s had it for how long it’s not like she had something acute develop. And I love how someone in the Er discovered it as well and they even said it saved her decades of trying to figure out what is going on with her. But like you said her symptoms might now even be that bad so she might never even have had a diagnosis or sought out a diagnosis. I agree 100% she could have explained it to the patient much better!
I agree a skin biopsy is unusual at this stage. It is also done to rule out or in, mitochondrial myopathies that are hard to distinguish from HEDS.
I think she will need to make adjustments after the injuries and surgeries so that bit is accurate... also she may be doing things that are going to cause issues down the line without knowing, so seeing an OT to check up on anything is a good idea. E.g. I caused permanent damage to my finger and thumb from holding pens and pencils in a way that stressed and over-extended the joints for 20+ years. The way I did/do a lot of things has caused chronic pain in certain joints... so yeah she needs to make preventative adjustments too.
i’ve watched the show! dr. leblanc tends to be overinvolved with patients in the er even though doctors there don’t have time to deal with every part of the medical process. this eds case is where that propensity shines but there have been incidents in other episodes where she won’t let stuff go when the patient’s general physician should deal with it.
2 out of the 3 times i had stiches i tore most of them and i just kinda suffered through cause my skin breaks easy
is muscle pain common? i was told that because i experience muscle pain it probably isnt EDS but after i insisted theyre looking at it anyway
Muscle pain can be very common. I have lots of joint pain but my son's pain is mostly musculoskeletal
It really bothered me that they didn't tell her what type she was diagnosed with, like you said. That can make such a huge difference and I think is so important to know in bringing awareness. Maybe even mentioning hEDS is the most common but only type without a genetic marker (as of now)
Skin Biopsy's can be useful, I got one. Even if they're not testing for EDS specifically, they can test for EDS linked problems like small fiber neuropathy. Kills two birds with one stone, New diagnosis, and more circumstantial evidence for EDS.
I agree with everything you saying. By the way have you heard off the new research they've found with Hypermobility Ehlers-Danlos Sydrome. X
Hey 😊👋🏼
So I'm 27, born and raised in Hungary but currently living in Germany
I actually never had full dislocations but subluxation in only 1 joint i know but that got "fixed" with an operation 10 years ago so I have no submissions standing everywhere in mid diagnosis (which I'm not sure is 100% accurate but whatever)
So I didn't quite fit for the hEDS criteria (missed some minor ones but had some minor for cEDS for that) but my geneticist wasn't sure about vEDS either - so there will be a genetic test for vEDS (and because public healthcare pays for the whole panel for cEDS as well), but first the skin biopsy should be done - at least that's the recommendation (we'll see if public healthcare will pay for that, if not that would cost 3-400€)
So now I have the diagnosis for HSD but luckily I found a great orthopedic doctor who believes me, recommended genetic testing and is willing on working on my joint problems one joint at the time (other doctors were like "yeah you have pain cause your joint isn't really stable so let's move on" or "we can't see anything on ultrasound/X-ray so you there's no reason for pain" and a rheumatologist who was the first person telling me I'm hypermobile t told me "I should feel lucky that I don't scream from pain by every movement or every time someone touches me")
Hey! It's interesting to hear that a skin biopsy would come before genetic testing. In the US, we can get the EDS panel for $200 without insurance. Hopefully these tests and prices will come to other countries soon, as genetic testing is more expensive in other countries which SUCKS
@@IzzyKDNA well the geneticist recommended it this way, because there's no genetic test for hEDS yet, so in case the test comes back negative for vEDS/cEDS/clEDS the insurance definitely won't pay for the skin biopsy (as far as I know there's like only one clinic in Germany responsible for this kind of testing, this is the reason why it's so expensive and not always covered by the insurance unlike the genetic testing)
Also, I hope you had a lovely Hanukkah!
Thank you!!
Skin biopsies are common among individuals with EDS. There is high correlation bw EDS and small fiber neuropathy (SFN). Biopsies are generally done on ankle and hip.
Way back in the day, they used to do skin biopsies to diagnose cEDS and vEDS. My sister had one for a different reason, but he sample totally fell apart. I have some muscle weakness and I don’t have the other types of EDS...hypotonia is common with us. I actually might have Loews-Dietz but I was diagnosed with EDS in 2007. Also, MS isn’t diagnosed via blood and urine tests haha
I am 64 just found I have it! My foot doctor told me to research it! Like tell what it is
Here for this one!!
Thanks for making this video!! Glad I'm not the only one that thought there were a couple issues with the way they talked about EDS. I really like the show, but got upset by the next episode (13) because they misrepresented a service dog as a therapy dog for a boy with CF.
Great job as always.
i love this show! highly recommend 💖
Omg - trust me! It does get worse… it kills be how they dont mention comorbidities also like Pots, gastroparesis, cfs 🤦♀️
You can't wait until you need a support system to get a support system!
Actually, for me they did a skin biopsy when they first thought I might have EDS and they found an abnormality (after the genetic test it turned out I don't have EDS but something else). But they did it as a start to get a diagnosis and to be able to get further testing done.
I was diagnosed with Classical and I have actually had all the same issues she did. I also have muscle pain, muscle spasms, tears and weakness. I only got diagnosed 2 years ago and I'm 48. I've never had genetic testing or biopsy. I wonder if I should get testing for confirmation.
Nearly 35 years from first incident to diagnosis (still pending) for me. I think milder cases take longer than those with more severe symptoms, as it's just less obvious, & doctors really need obvious to even consider it. I have quite literally sat in doctors' offices with a long list of symptoms and co-morbidities & said "No one has this many random weird conditions...there must be some underlying condition causing it all, maybe at a molecular level? Maybe I don't make a protein or something? Surely something connects all these???" Seriously, I distinctly recall using the words 'connect' & 'connection' on multiple occasions, & still nothing....for 35 YEARS!!! argh. ~sigh~
i had a skin biopsy and i have small nerve fiber myopathy. in my research i’ve found that it is considered a symptom
I’ve read recent studies that there may actually be a link between EDS and MS...
Really? That's interesting. If you have them or know where to find them is love to read them
I've seen that too! But i think it's only one study from over 10 years ago and hasn't really been checked again, but i could be wrong.
Oh ok I went back and looked at it, it was from 2013 but was recently posted on OH T.W.I.S.T. ‘S Twitter :)
She always has some really good links and info.
Love your channel Izzy! I think I first found you a little over a year ago.
I finally have a somewhat official hEDS diagnosis from a disappointing rheumatologist appt that at least led me to a geneticist appt this coming January lol.
Tulane in New Orleans just opened a hypermobile/Ehlers-Danlos clinic attached to their ortho dept, but it’s only open two Mondays a month and is already booked through May. It’s kind of a big deal, bc apparently doctors down here are kind of ignorant about EDS.
Sorry that was a lot irrelevant to the original post rambling 😂
my vEDS friend has MS
Your stickers are so cute!
Ah thank you!
I actually have a friend and her sister that were diagnosed by a dermatologist via skin biopsy. They were said to have heds but havent seen a genetic doc so who knows what type it actually is.
I’m not going to be as hyper mobile as a younger person or as I was as a young child, I am 48 and my body has gotten stiffer now. I have worse pain now than I did back then, I am a high risk for falls more now than I was then. I will injure myself now than I did back then. Ugh, maybe people need to do their research so they can get the facts right. I was in a accident back in 2004 and I had my bladder to rupture, my Aorta was torn and my lung was collapsed. Nope, not many people or doctors know what EDS is but I found something from the EDS foundation here in TN. That I hope that I can help change that! I have Classical EDS and I have bruising easy, my bladder got ruptured and many other complications due to both of them.
I’ve had three surgeries with stitches and one with staples. 3/4 of those instances, my body completely rejected the stitches/staples, and took months to heal. Ugh #EDSprobs
Great job Izzy.
If you talk to my Drs they definitely believe EDS is degenerative. I know it effects everyone differently but we all worsen on some level as we age. In less then two years I went from having no chairi malformation to having a 9mm herniation (I don't work or had any accidents or anything). So definitely I believe EDS is degenerative. You can even look at the level of degeneration on my spine as well in just two years (Its unbelievable).
Exactly! I'm not diagnosed yet but I strongly believe I have some form of EDS and I've absolutely gotten worse with age. I've just recently strained the muscle in my back for no reason when that's never happened to me before. My pain, joint instability, GI issues, everything is progressing with age. It could get better but that doesn't mean it won't have lasting damage.
Big traumas both physically n mentally n sexually can "hyper speed or turn on" eds
I think they did the biopsy because its fast and dna test is months??
I say Éhlers danlos, you say èhlers danlos and my doctors said Ehler danlò like its a french word and like i said it wrong....i still dont know whats right 🙄 im from holland.
Great job Lzzy.
EDS is totally degenerative. My knees barely function in the cold and my hands ache constantly thanks to arthritis. I dread them getting worse or it spreading to other joints.
Yes i screamed
What program is this please and thankyou
Have you watched the episode of The Good Doctor that has Elher-Danlos Syndrome in it? I would be interested to hear your opinion on that episode ^-^ S3 E16 is the one where it features one of the variations of EDS :)
Disclaimer that I'm not sure whether I have EDS or HSD yet, still going through the diagnosis process, but it's likely I have one or the other. I've had a lot of joint pain and other symptoms since I was a child, but I definitely feel like everything got worse in my mid-20's (including developing Osteoarthritis). So I agree that there seems to be a degenerative aspect to conditions like these. I also felt the dialogue about having the diagnosis forever was too dramatic. I've been getting diagnoses that I will have "forever" since I was a child but the doctors never let me think it was the end of the world and it never really felt that way. I don't want to minimize the range of emotions one can experience during a diagnosis, especially if your doctor sucks at explaining it OR if it's a painful condition...but like, the dialogue just felt really off to me, from my experiences and from what I've heard from other people with EDS and similar chronic illnesses. So I agree with your comments on that part of it too. Great video!
It’s not degenerative in a sense but many problems associated with EDS are actually progressive. E.g., joints becoming looser and looser over time.
i don’t have eds but i have other chronic illnesses. i agree her approach was not as nuanced or compassionate as it should be. i do think though, that you start to notice more of your symptoms once you know more about the condition. so, based on my experience, it makes sense for dr. leblanc to feel sorry that eds may be a barrier for the patient’s plans
Muscular contraction type???(5:34)
Maybe she was saying that because she's already had symptoms, and she's just had a traumatic injury. I mean, her shoulder will probably get worse. And bladder pain can be intense.
I agree that there could've been more info given, to educate watchers, but for a TV show? Eh, I guess I don't believe they'd think it was interesting enough, which shows that the patients aren't conning back. Or they'd get more developed.
Just had dental surgery 3 weeks back. Removed nearly all my teeth. about quarter of the stitches fell out within 48 hours. Normally I should have gotten fitted for dentures yesterday. They are thinking 3 more weeks before they will even try again.
This video is just another horrible representation of disorders. While in medical speak EDS may not be degenerative in reality for the individual having it might as well be called that since the overall effects absolutely get worse with age.
They went too overboard to make this dramatic for the audience and seriously overplayed the EDS card as a result.
Totally can relate to your dental woes, I need to get the rest of mine removed- have a partial plate now... just been putting it off since the pandemic, and fear of healing issues.
@@katkaplan3 For me was the pain that made me not only put it off but not see a dentist for decades. Locals do not work very well for me. Never have. And every dental procedure I have had with just a local left me screaming in pain in the dental chair.
Had to find a charity organization to pay for anesthesia. And they did it because I have autism not because anyone recognized I may have hEDS. Still fighting for a diagnosis or alternative explanation.
I think the skin biopsy thing is very controversial. There is only a small chance it would be positive in heds patients. Sadly the doctor I will go to to get potentially diagnosed wants to do one too (after the other normal testing) maybe it’s to have another (possible) confirmation but I guess it’s also to make money lol.