I’m right about at that point. I’ve had multiple doctors say things like “you probably have EDS” and “there’s a good chance your stomach motility is low” and then decide that it’s not worth their time to test me for these things because they don’t believe it’s significantly impacting my life. My current diagnosis are “chronic pain and nausea,” but no one can tell me why.
@@summero1554 I'm 3 years into my journey doqn diagnosis lane. And it's sucks having the inside of your body fall apart but look healthy most days to people who dont know you.
@@sarahcooper8705 It’s probably been about three years for me too, it’s comforting to know there’s other people going through the same thing, but it sucks that there’s so many of us that aren’t taken seriously.
@@Void-b7r I’ve been to a geneticist but it was through children’s hospital (I’m 18) and I’ve never been taken seriously there. They only tested for HEDS and while my joints hyper extend they don’t go far enough to meet the criteria. My mom asked to do the full panel and the doctor agreed. When we got the results back it showed that I had only been tested for vascular EDS and marfans, two things we were already pretty sure I didn’t have. When I was filling out the checklist before my appointment I could mark almost every symptom, but I guess those symptoms don’t matter if you don’t meet the criteria, at least according to children’s hospital.
I mean, DR. Mike's video could do a better job addressing the biases that lead to this kind of condition going underdiagnosed. I've heard lots of stories of EDS patients not just going misdiagnosed, but outright dismissed as dramatic or faking.
That's where I am. while I pass the criteria for hEDS that may or may not be the diagnosis in the end. But until I can get a doctor to take me seriously I'll never know what is causing so much joint pain and instability. I also think it's harder due to my age. about to turn 56 and wasn't even diagnosed with Autism till 54. hEDS IS a comorbidity of autism but it's far to easy for doctors to write my joint pain off as arthritis. I may be wrong here, but I've never meet someone that is both hyper-flexible AND has traditional arthritis.
I fully agree. Took my 37 yrs to get diagnosed. Growing up i got alot of doctors thinking the dislocations were self harm or abuse. And of course niether were the case.
For twenty-six years I was just a complainer and clumsy. My flexibility and stretchy skin was a funny little party trick. When my daughter had the same symptoms, I missed it because I didn’t know these things were an issue because I had always been dismissed by every doctor. It wasn’t until her EA at school told me to Google EDS because her grandson had it that I even found out what it was. Getting my and my daughter’s diagnoses was… life-changing. I never thought I would feel relieved to know that I had an incurable life-long disorder but just to finally have an answer meant everything to me.
The thing with family history is that if you have an underdiagnosed condition, there's a pretty high likelihood that your family members haven't been diagnosed. I currently suspect I get it from my dad, since he has chronic joint pain, but I've never heard him mention anything else that would indicate EDS. Family history should be something that helps indicate EDS if you happen to have diagnosed or presenting family members, but a lack of that history shouldn't cast doubt on whether a person has EDS
especially not just considering its not as well known of an illness, but putting classism and racism in the equation as well, healthcare still isnt always accessible. A lot of people in my family (including myself) struggle to get adequate treatment due to being poor (whether it is sub-par healthcare with terrible doctors and limited options or just no insurance) and being fat so many people are neglected for their health in my family because we are all chunky af and not taken seriously. if someone who has EDS is in a family with a lack of access to healthcare (or previous lack of access in other generations), it also makes finding a family history harder just adding adversity and systemic medical oppression from things like classism, racism, fatphobia etc into the equation. long story short, i hella agree with you that you can easily have a family history of EDS with no way of knowing.
A diagnosed family member is one of the various criteria for an hEDS diagnosis, but as you say when it's so underdiagnosed to begin with it doesn't really matter if they have symptoms as that's effectively meaningless. Not everyone has contact with their family either. There's also the issue of them changing the criteria a few years ago to try and narrow down the genetic mutation. Many people got their diagnosis before the criteria changed and would no longer meet the criteria for a diagnosis now, yet they keep their diagnosis and others can no longer obtain one. It's a very frustrating situation when all you want is an answer so you can get the help you need to live your life, but more often than not decades are wasted bouncing doctor to doctor, none of whom communicate with each other or have a clue what they're doing, all whilst losing mobility, independence and dignity.
Very very true. I have hEDS and osteogenesis imperfecta (OI). Originally I thought I only got the OI from my mom and not the hEDS, but over the years I've realized I probably got it from her. She has such severe joint pain, and I never thought of her as being hypermobile, but neither did I before I actually got tested and was found to be profoundly hypermobile.
This is an excellent point and likely means a lot of people with EDS aren’t meeting that part of the criteria. I’m the first person in my family to be diagnosed, and for years I didn’t know which side of the family it might have come from because while both my parents have some medical issues (RA and other joint pain for my mom, a bunch of the same symptoms as me for my dad *except* the joint stuff, like gi issues, and migraines on both sides) neither had clear obvious symptoms of EDS. I finally found out just last year when my aunt was visiting that my grandmother (dad’s mom) was hypermobile, had extremely soft skin, etc. But of course she was never diagnosed with anything. Considering how hard it is for people today to get diagnosed (I was diagnosed at 30 after a lifetime of symptoms), and how the condition seems to be more common in women, who are frequently taken less seriously by drs, it’s no surprise my grandmother never had a dr take her issues seriously considering how much more sexism there was in medicine back then (I mean my mom’s obgyn was still telling her pms wasn’t real well into the 80s). Considering how long it takes most people to get diagnosed and how much more “rare” it was considered until recently (likely do to severe under diagnosis) I imagine a lot of people have family members/ancestors who did in fact have it, but were never diagnosed or even had their symptoms documented. Then there’s the gender issue: EDS seems to be more common in women*, but presumably can still be passed on by male family members who carry the gene. Like I said above, while my dad has a lot of the same non-joint symptoms I have that have since been attributed to EDS, he lacks the defining symptom of hEDS: hypermobile joints, so he certainly wouldn’t be diagnosed. So if someone inherits it from male family members they’re also not as likely to have a documented family history of EDS. *An interesting aside about the possible different presentation of EDS in men: I don’t know if this has been researched at all yet, so this may just be anecdotal for the moment, but it’s possible EDS may just be more *symptomatic* in women, and men with it aren’t just asymptomatic carriers but actually may have some of the symptoms. I know several trans men with EDS who were diagnosed before they transitioned. Once they begin taking testosterone as part of their transition, they all noted their joint hypermobility issues improved, but other symptoms remained. It’s pretty fascinating and suggests there may be a hormonal component to the severity of hypermobility in EDS patients. If it hasn’t been studied yet, I hope it will be soon!
I was 15 years old the first time a doctor told me “your ligaments just seem like overstretched rubber-bands”, but I wasn’t diagnosed with hEDS until *12 YEARS LATER!*
One thing I am SO GLAD that you both mentioned was the fact that not all hypermobility is EDS and that there are other things that cause similar symptoms!! I think one thing that has come with more awareness of EDS that I see a lot online is people who seem to have benign hypermobility or something that immediately jump to "omg do I have EDS?? I bet I have EDS!" Theres dozens of posts on forums of people assuming they have EDS when what they describe is normal joint hypermobility in ~20% of people. Im so glad that EDS is getting more awareness, but its created a bit of concern for me seeing a lot of people who either are mildly hypermobile with no other symptoms worrying about it and even people flat put self diagnosing.
Like 👍 if you wanna hear more about the genetic counseling career. Izzy, I’d love to know more about your career path and how to become a genetic counselor. Also jobs for people with chronic illness, things like that. Gosh all your videos are super helpful.
Ah I'd love to talk more about it! Did you see my two videos on it so far? ruclips.net/video/I472YYyEm6c/видео.html ruclips.net/video/F7H5d5wL85w/видео.html
@@amber3574 getting the notifications to ring the way you want... grrrr takes months or more. I have to continue to redo the notify all bell every other month on Izzy's channel alone!
Dude you are so fast!! I wish he would have covered some of the stuff outside the really stereotypical stuff (like pain, not as stretchy skin, and being misdiagnosed with psychological disorders) But I'm still so glad he covered it!
Yes same! I'm still SO glad he covered it!!! If I were to add one main thing to his video, I wish he mentioned chronic pain, as that actually tends to be the primary concern for most
I only have velvety skin, but not stretchy, so I always thought I couldn't have EDS.. I also got my hypermobility diagnosed very late... but after those pieces began falling into place it was easier for me to again suspect hEDS.
I have hEDS and my skin is BARELY stretchy (and only in certain areas around my face), but I have the velvety skin, my whole life people have commented on it
Same here as well! I always have some of the softest skin people have ever touched and my skin is slightly stretchy. Maybe someone else would notice, but I never did until I started looking into my hypermobility and comorbidities. I have had wrinkles on my forehead and neck since middle school though. 🙄
people have always commented on my skin being so soft, and on the back of my hands it's much stretchier than izzy's for example, yet doctors say it's 'normal' because they have that image of extremely stretchy skin stuck in their mind.
My cardiologist said to me on my initial visit "You know Ehlers-Danlos is not something I see every day. I assume your case is very mild" Me: I dislocate my shoulder 12-20 times a day Cardiologist: ... _oh._
The reason I still don't have a diagnosis is that doctors kept insisting my labs are fine, and only other testing really showed things that are wrong. All my diagnoses are consequences of EDS, but most doctors have written me off as hysterical or drug-seeking
When I first told my doctor I think I might have EDS she said "oh, you don't. people with EDS can't walk and only use wheelchairs" and she didnt even listen to me://
@@libbydeland yeah i knew she was wrong but she literally didn't even let me speak. i had a list of symptoms written down that are on the EDS checklist + i score 7 in the beighton score but she literally didn't let me speak:)
I went to a docter saying 'i think i have eds', and she said: 'thats not possible cause you have chronic pain and that is not a symptom that comes with eds'. I was like: do you even know what eds is?! Chronic pain is symptom nr 1!
Why dont drs listen, this infuriates me. I have severe pots and my sts wants me to exercise to build stamina. How does one do that if you faint from the floor!?
I was diagnosed with EDS this past September, so I’m very new to all of it. This is one of the many reasons why I had to retire from the Fire Dept. Your videos are always so informative and I SUPER appreciate the work you do.
This was a great reaction video! I definitely agree with you that he should've briefly discussed the co-morbidities because of just how overwhelmingly prevalent they are. Struggling with chronic pain, hyper-mobility, difficulty healing, dizziness, fatigue, and GI issues, I also always felt like I had way too many things wrong with me for it to be just a bunch of random health problems, but never knew what. People forget connective tissue. is. everywhere. I had no idea that it would be my cardiologist testing and treating me for POTS who would actually take time talking about my chronic pain and hyper-mobility who would suggest to see a geneticist for EDS. We forget that specialists tend to kind of just center in on their one area of expertise when the answer is so much bigger and deeper than one thing. Had it not been for my cardiologist already familiar in POTS being very prevalent in EDS individuals, I don't think I would've gotten any referral anytime soon (for reference, I have been seeing doctors and misdiagnosed with fibromyalgia and chronic fatigue syndrome for eight years, so it has been eight years of running in circles until my cardio and me becoming aware of EDS through him and online resources like Izzy, the mighty website, etc)
I also was originally suspected of EDS by my cardiologist, for a valve issue that was unrelated to my EDS (it ended up resolving with time). He then referred me to an orthopedist who had never heard of EDS and the two of them ended up doing my Beighton scoring together because of how new the condition was to them. Weirdly enough, the D.O. that’s my physical therapist has had so much training on EDS, so he’s been one of the best resources (not that Drs of PT knowing about EDS is all that wild, it’s just a little crazy that he knows the most even compared to physicians in joint specialties who have been in their careers for longer than him, and even internists who don’t know how to treat EDS other than saying inactivity is safer than exercise, even though joint strength prevents sub/dislocations 🙃)
Same! Every doctor commented on my lax ligaments, even the doctor who delivered me when I was born predicted that I would have "loose ligaments," but none of them ever connected the hyper mobility to EDS. I had to do the research and discover the syndrome myself before the 10th (?) doctor finally confirmed it at age 30, when osteoarthritis had already set in.
I wasn't diagnosed until I was 50 ! Even then it only happened when a friend sent me the hEDS checklist and I took it to my rheumatologist of 20 years ! I had had back trouble since a child, had to have my knees replaced and one hip replaced at a young age due to severe osteoarthritis diagnosed at 18. Also had an RSI /Overuse injury at work where I was labelled a 'malingerer' but still ended up on disability and misdiagnosed with fibromyalgia for 20 years ! WTF is wrong with all my doctors to miss all those symptoms !
Same here. I’m in the UK and only got diagnosed because my adult DD was diagnosed. I was 57 and have had a lifetime of classic symptoms which were all treated separately without anyone linked them together.
You mentioned how a doctor told you that EDS only impacts your heart and eyes. I relate to this! The rheumatologist I initially went to told me that I can't have EDS because my aortic valve is messed up instead of my mitral. I'm waiting for a referral to another rheumatologist.
42 year old disabled veteran and I'm going on procedure 15 on various joints. The last two were my shoulder 2021 and elbow 2019. Insane that I've been looking forever and finally found this subset of diseases. Thanks for the information. So frustrating to have doctor's tell you your pain is all in your head. Yet I've had dislocations since my teen years and shoulder and knee subluxation throughout as well as the stretchy skin and hyper mobile joints. And yes I've had doctor's mention the hyper mobile joints and just not connect the dots. Thanks again !
We thought I had Hypermobile EDS or Type 3 as it used to be called....I had genetic testing and we now know that I have Myopathic Ehlers Danlos Syndrome. It has the genetic COL12A1 variant. But it has cross-over with Muscular Dystrophy between Bethlem Myopathy and Ullrich Myopathy. I'm having an MRI w/contrast tomorrow to try and sort out a good spot for a muscle biopsy to confirm or rule out the Pathogenic active myopathy. The myopathy can appear at any age-making it challenging to sort out. It's been challenging even having a diagnosis because the favorite line of physicians is to tell me "You're too complicated!".... EDS has come a looonnnggg way in a relatively short amount of years, but it has a long way to go. Honestly, it would be much better to hear physicians "honestly say they don't know." I have the co-morbidities of EDS with Dysautonomia & Mast Cell. The best advice is to get tested through a legit genetic company like Invitae or Fulgent. Avoid the Ancestrial type testing. It's not the same as medical genetics. And the EDS panel through Invitae cash paying price is $250.00. It usually can go through your insurance company and worst case scenerio, many people qualify for their patient assistance program and can pay as little as $100 out of pocket. :)
I'm almost certain that myself and both of my children have hEDS. I've been suspicious about just my son for some time. But more and more things are adding up, for all of us. They were both diagnosed with POTS, and I have unexplained tachycardia. If I go into it all this will be a book. Lol. Anyway, I mentioned it to his doc for the second time. Her response was that those disorders were really obvious and he didn't have the symptoms. So now the hunt is on for one who will actually take us seriously and go through the criteria. BC we all pass them, except ironically maybe me bc I was diagnosed with RA 10 years ago since no one could figure out why else all my parts hurt. So the other disorders thing might get me due to a misdiagnosis. All very frustrating. More frustrating that I've been through all these RA treatments wondering why they weren't more effective. Your videos are very helpful. Thank you.
So I meet a lot (and I mean A LOT) of the criteria for EDS and have been fighting with my doc for over a year to find out what is wrong with me. Today he tried to diagnose me as just having depression. I finally told him I wasn't leaving until he referred me out because my pain is real, it isn't in my head, and I want something done about it. I get to see a neurologist and hopefully that will give me some answers.
Hi Izzy! ... Although I have not been diagnosed with EDS, I believe after serious research, I have it. Almost everything in my body has prolapsed ... heart valves, uterus, bladder, bowel. My ankles have always rolled when walking. When I was young I could pull the skin away from my elbow several inches...like the guy early in the video. I could also pull my fingers all the way backwards. As a kid, I would put on a little show for my friends, they couldn't do any of it of course. I did not realize that this was medically significant at the time tho. I was always a sickly kid, and extremely underweight although I ate like a horse. I would pass out momentarily when I stood up. I also had low B/P. I have some type of bleeding disorder too, with easy bruising and petechiae. My mother said "yes, we are a bunch of hypermobile people" She had taken a few yrs of dance lessons as a child and could still do the splits, and pull her leg up over her head into her 40's. She could also touch her tongue to the top of her nose! I started having constant subluxations when I was early 20's. My chiropractor has to re-adjust me after giving me therapy and an adjustment just minutes before. He said jokingly.."I'm going to have to pour Elmer's Glue in you to hold you together!" LOL My problem is, now that I am 65, and I just found out about EDS earlier this year, I am no longer flexible. I have a ton of arthritis issues, the worst in my spine. I also have a slow developing form of ALS. So I have showed my new doctor all these problems and she did the test in office and I can no longer pull my skin way out, touch my hands flat to the floor (although I did pretty good for such an arthritic old lady). So she said I think you just have Fibro and that is what I am diagnosing in you, and Rheumatoid Arthritis. My former Dermatologist said in 1999 "You very likely have a Connective-tissue disorder. He's retired now. I've mentioned these things over the years and no doctor has ever put the two + two together. Do you know of any older/elderly people that present similar Izzy?
Hey Bonnie! While I don't know anyone personally, I've seen a lot of comments from people around your age who have a diagnosis of EDS and who aren't flexible like they used to be, and it made it harder for them to be diagnosed
There is a Facebook group that is super helpful and very wide reaching, there are many members in Australia, where a lot of research is being done and there are many doctors. I'm in my early forties (in the US) and just beginning to experience some of the stiffening and loss of flexibility you've described. I've done nothing to actively maintain it, and in fact I'm still doing grievous injury to my ankles, for instance; in November I stumbled off a kerb and dislocated my ankle so badly, the EMTs who picked me up were certain I had broken it, based on visual assessment. By the time I had some morphine in me (because *wow* did it **HURT**) and had settled down a bit in the ER, I didn't even notice it slipping back into place, I just realized I could flex my ankle at one point!
Maybe he choose a male, cause he has a male patient with EDS. 1 1/2 month ago he posted a "day in my life" video and said he had a male patient with easy brusing and that they will find out if it's EDS. His old video was the first time I heard of this illness and in 10 days I'll have my appointment at the centrum for rare deseases to find out if I have hEDS, cEDS or just HSD thx Dr. Mike! and of course thx Izzy for all the things I learned and that made me laugh watching your videos the past 6 weeks
I'm a massage therapist, and I'm finding it so difficult to continue on with my job with EDS. I'm constantly putting my hips and back out of place, and my fingers and wrists hurt so much.
Oh my gosh this makes me so happy to know that Dr Mike talked about this and brought attention to it! I have POTS and EDS and when I got diagnosed I did so much research and wanted to share all I learned about it and raise awareness but it was hard and not many people with a large platform like his talked about it before. Its so good to see awareness for it being brought up!
I’m currently in the process for getting an ehlers-Danlos syndrome. I’ve been in physical therapy do to a brain injury and I brought up my frequent subluxations. She also noted my very hyper mobile joints and the fact that I come in with a new bruise every session. I also have gastroparesis she then brought up EDS and said she would talk to some of the pediatricians at the place where I do physical therapy. I also had an orthopedic who did a beighton test and I scored a 9/9 so he’s referring me to a geneticist. I also had a recent GI appointment who talked about my history and is also referring me to a genetics so hopefully I get some sort diagnosis soon
Another aspect of the family history aspect. I have many of the symptoms. I have spoken to Drs since I turned 18 about my symptoms and blown off. (My mom thought I just had a low pain tolerance as a child when I complained of joint pain…). I have always bruised easily and I was told “some people bruise easier than others” when my lab work was normal. Now that I am seeing hyper mobility in my kids and one has a cardiologist suggesting a tilt table test for POTS and another seeing a rheumatologist for hives and inflammation (at 9) I finally just asked the PCP about EDS and asked if there could be a connection between their hyper mobility and these other weird symptoms everyone of us has to varying degrees. To his credit he said he was going to research and get back to me.
I love it whenever Dr’s say stuff like that!! Mine did a similar thing, I told her I had a family history of EDS and I have a lot of the seemingly unrelated issues, she said, “I’m not very familiar with EDS, let me look at what the diagnostic criteria are and we can go through it”. We spent the next 10 minutes just working through all of them, she gave me a bunch of referrals and said she might send more once she can do some more research into it to see how it’s managed. My respect for her went up 1000%, so happy to be working with a doc that doesn’t have an ego and can say she doesn’t know when she doesn’t know!
I was so bummed when the photos leaked of Dr. Mike partying with tons of people in Miami in midst of the pandemic. I wish he addressed it, but I suppose since it's true he'd just let more people know that he acted irresponsibly. So disappointing when people are like "do as I say, but not as I do."
Human nature, we forget our own risk factors to any danger in favor of having fun and only later recognize the potential consequences. Or even if you know, can't change your behavior. Smoking might be the best example of this in the medical community as a whole. For decades doctors would tell their patients to not smoke, while them and a large percentage of their staff still smoked ! Humans are very bad at risk assessments and unwilling to change behaviors even when they know the risks until forced to by the community at large. Look at the huge number of people that won't take masks seriously during the current pandemic. A large portion of them present legitimate information about why masks do not protect you from getting sick while missing the point that has nothing to do with why masks help prevent the spread of Cornoavirus. (pardon if i spelled that wrong). I had dental surgery just last week, and the doctors own office had me sign paperwork that completely misrepresented the risk factors on why we need to wear masks. When I tried to point this out to the staff they mistook my efforts as being anti-mask when in reality I was trying to get them to present medically accurate information to encourage mask use outside that specific clinical setting.
I really love your channel so much! I found it a year ago just after my orthopedist told me he suspected EDS and referred me to genetics. Now I’m in the process of getting blood tests and Echos to determine what type it is. I really appreciate you doing this and having this channel.
I didn’t get diagnosed till I was 37, I’m turning 38 tomorrow actually. I didn’t start having painful symptoms till I was in my mid 30’s. And my MCAS didn’t come on till I was 36. So weird how this came about! I noticed something wrong around my birthday last year when I had horrible chest pain , (Costro) and my doctor-friend from church is the one who finally put all the pieces together for me! I do have Cranialcervical Instability and those symptoms didn’t come about either till I was 37. I was always hyper mobile as a kid and was in ballet, gymnastics and cheerleading. I am feeling the hEDS pain a lot more now as I’m getting older. My ribs pop out of place just this past year as well. Has anyone else had the painful symptoms come about later-ish in life?
Wow. I wish I had been as aware as you are at 23! I was diagnosed with fibromyalgia when I was 14, hypermobility (parading as fibromyalgia, which was incorrect, I have CPTSD which often has a physical manifestation of fibromyalgia) diagnosed at 28, and EDS finally floated for the first time at 33, I believe, but quickly dismissed because my skin didn't stretch far enough. I immediately recognized EDS because my cousin's daughter has it as well, and has the severely stretchy skin (which would in fact bust open in horrific injuries as a child, she has crazy discolored scars from healing massive stitches). She also had organ problems, was born with 3 kidneys but only one really functioned, and not well, this was apparently due to the EDS as well. And I'm not certain if this is related or not, but she had a large brain tumor removed in her mid-twenties, and it had been affecting her personality. Regardless, I began to suspect perhaps I did have EDS when I did a little research on my own and looked at all my symptoms and comorbidities. So I got an appt with a rheumatologist and thus began a 7 year stint as her teaching case every 2 months. She was amazing, really. Oversaw all my care with my other doctors, made sure I was following up on everything...she retired in Dec 2019 and I'm still in the process of finding a new Rheumatologist, my area has a bit of trouble keeping them, for some reason. I have POTS, Osteoarthritis (juvenile onset) and RA, my feet are an absolute mess (I've had 9 orthopedic surgeries, and 8 of them have been on my left foot/ankle, including two emergency surgeries this year, when my foot decided to reject hardware installed Sept 2019, and screws were literally coming unscrewed and poking out through the skin, creating an open wound that led into the bone, and ultimately caused a staph infection in the bone, which led to a week-long stay in the hospital during Covid, a PICC line and six weeks of IV vancomycin once I was discharged, and another six weeks on oral antibiotics after the PICC line was removed.) TMJ, plantar fasciaitis, easy bruising, extremely bad eyesight, migraines, IBS, CPTSD, fibromyalgia, anxiety, depression, adult-onset ADHD (due to the CPTSD), insomnia. The PICC line was extremely high maintenance, as well, possibly due to EDS, oh, and I'm an extremely hard stick for IVs and blood draws, likely due to EDS. I also am recovering from Covid. I didn't get sick enough to be hospitalized, but I had a lot of trouble breathing and barely ate for about 10 days or so. I caught Covid because I was caring for my brother who has spinabifida, as his aide was sick with it as well. We are both finally on the final edge of this, 🤞, its been since 11/9!
Before I found your videos two years ago I didn’t even know about EDS, but after watching a couple of your videos things started to make sense for me, but EDS is so unheard of in Australia that when I went to the Dr to ask about getting tested they didn’t know what I was talking about, I’ve had so many Drs google what it is then tell me that I don’t have EDS, without even testing me, but after two years I have finally found a Dr who believes me and is going to test me. I also wanted to say thank you for making videos about EDS because without your videos I don’t think I would be any closer to knowing why I’m in pain all the time and have been for over 13 years, and I know you may never see this but thank you Izzy.
Really enjoy the passion you have in the medical field. I watched some of the pain mgmt videos. To me pain is THE worst, and hey despite your physical issues you still have that superior natural aesthetic:) . It really shows that good lookin girls and guys can have mental or physical struggles contrary to some beliefs from an outer perspective. hope your havin a great hanukkah.
Sometimes what I see with myself with EDS there’s more, way more bruising and thin skin than flexibility but when I was like 2 or 3 years old my ankles went so inward the looked like they would be touching the floor and since I played baseball this made my nees hurt really bad so I got ankle braces. But just the fact that someone that at least talks about this stuff really just makes me happy.
You seem smarter than me I've just turned 22 and only just started pushing for a diagnosis as I've been struggling my whole life like many people but I just went on mental doubt on my self but since watching your videos and also talking to my nurse friend I do finally have sort of a diagnosis of hypomotility and fibromyalgia and also still looking in to EDS but as there's been none else in my family with the condition (my dad's side for medical history is unknowen) doctor's have just left it there but I'm still on a journey thank you for your videos and bravery always sheds light when needed
I'm not flexible. At all. Maybe that's why I wasn't diagnosed until 34. But I fought hard to get a diagnosis. So much of my life makes sense now. I have kEDS.
Haha i was diagnosed with lax ligements, hypermoblity, joint pain, and severe flat feet at 13. But they just shrugged and were like 'how bizarre'. Wasnt till i was 24 a doc diagnosed me with EDS.
I just want to say I love you so much and I thank you for all of the information and experiences you've learned about and dealt with! You've been such a light in the darkness for my family ❤
I find your videos so helpful and interesting. I’m going to see a geneticist next week to get tested for EDS due to all my symptoms. The information you provide is very important and helpful to me. Hope you’re doing good. ☺️
I have actually had a doctor tell me EDS is not genetic and cannot be passed down. And that comorbidities I have, don't make me high risk with Covid-19, when they do, and all my other doctors were telling me it does. I have so many stupid doctor stories, it's sad.
I also have several idiot stories sadly lol. One Dr I tried telling about the Beighton scale and he didn't care at all. Another Dr told me if I had REALLY dislocated my hip, he would have to put it back in for me bcuz I couldn't do it myself....
I kept getting all these little diagnoses like IBS, GERD, fibromyalgia, etc. Abnormal tooth formations, hemorrhages, easy bruising, 10/10 Beighton. Grandmother and father have the same. When I discovered EDS, I brought it up to my doctor and it was like a light bulb went on over her head. She actually exclaimed “Yes! That explains everything!”
My mom had recently told me that when she was younger her doctor had tested her for eds but the results were inconclusive. It truly makes me wonder sometimes considering how much I personally can struggle with things that are easily stated as symptoms of eds. I don’t know weather I should bring this up to or not as I’m not always taken seriously on these kind of topics.
I've been back & forth to my doctors for around 5 years now and only in the last 6 months I was told I have hypermobile shoulders, knees and elbows. But I also have internal issues etc but all my scans, bloodwork and check come back that I'm healthy and nothing is wrong. Some doctors just fob it off as it's in my head and non existent 😡😤😥 I'm in the UK. Just waiting on an appointment for an endoscopy to check my throat/gut and a rheumatologist appointment
So I went to the rheumatologist and the doctor agreed that I am hyper mobile and said I could have EDS or JHS, do you think it’s worth it getting a definite diagnosis?
I would say so, but everyone is different and there's not necessarily a right answer. Here's a video I made about whether or not an EDS diagnosis is "worth" it: ruclips.net/video/GStXLLP3cys/видео.html
lmao i basically told my doctor about this and i also have a lot similar symptoms. But he cut me off even before i finish explaining about it. And now i'm to scared to reach for help, even i'm in so much pain everyday and it is affecting my life quality
I'm so sorry your doctor didn't even listen to your symptoms and dismissed you like that. You deserve to have a doctor who actually will listen to your concerns. I know it's probably really hard to want to talk to another doctor about it given the bad experience you had, but just know that there are good docs out there, and i really hope u can find one who will listen
I had an awesome dr. She said always said I had something she just didn’t know what it was…I always apologized to her that I must seem like a hypochondriac and she would always reassure me I was not and not to let any doctor say I was… I finally got a diagnosis after both my girls were seen by a geneticist. I went back to my GP and she said she didn’t know much about it but would study up on it so she could help me as much as she could.
Totally agree with everything said in this video! I'm glad Dr. Mike raised awareness of EDS. My symptoms were more vague and random -- chronic debilitating fatigue, early onset bilateral knee osteoarthritis, chronic pain, gastroparesis, dysautonomia, but normal blood tests. I had a lot of muscle strain, but no dislocations or dramatic skin hyperextensibility (mine is mild, like in this video haha). These symptoms also mainly started after I developed a pneumonia and then never recovered. I was frequently dismissed as having a psychiatric illness because my blood tests were normal and didn't explain my severe symptoms. Finally I saw a chiropractor for back pain and then she examined me and found hypermobility in my joints. Suddenly a lot of things I had dismissed made sense. The funny thing also is that if you have a hypermobility disorder, a lot of the hypermobility seems normal at first because it's how your body has always been, but then it takes an astute healthcare professional to see it. I'm a medical student and I hadn't thought of EDS/HSD as a cause of my symptoms (I had only seen the super severe hyperextensibility and mobility photos). I'm so grateful to that chiropractor who ended up figuring out what was going on with me the whole time.
Yay, thanks for doing this vid! I had not seen his vid yet. I'm disappointed by his vid, at least the clips you reacted to.... I wish he had done more research....just like 10 more minutes of research rly. It doesn't take that much I dont think to see the things that he misses that you brought up - such as more female patients and comorbidities. I disagree with talking to my Dr about it bcuz they don't ever know what I'm saying. One Dr I tried telling about the Beighton scale and he didn't care at all. Another Dr told me if I had REALLY dislocated my hip, he would have to put it back in for me bcuz I couldn't do it myself.... Which brings me to my critique of how he suggested the imaginary male patient would come to him bcuz of bruising..... unlikely. I think pain or gastroparesis issues would be the reason for the medical visit. I also wish he would have touched briefly on a few of the subtypes especially vEDS. And subluxations/dislocations should have been brought up.
at 24 I had surgery to try to keep my right shoulder in place, at 33 9 Ortho's have looked at it and are recommending not only surgery but bone grafts or replacement!
i have an appt in january to get checked for eds and im pretty nervous cause when i called to make an appointment they said the doctor only takes on patients if theyre treatable which makes me think he wont diagnose me so he wont look bad the only reason i got an appointment is cause my insurance and main doctor got on his case and forced him to see me its not looking good for me
At 17, I was told fibromyalgia, 30s EDS, 41 stripped back to Fibromyalgia by a new GP when I went in repeatedly for life stopping neck pain. 1 year wait list for neurologist, and told to take antidepressants. I give up.
They can't just take away your diagnosis. If you're less hypermobile now it isn't because you don't have EDS but because as we grow we stiffen up. The point is that if you were ever hypermobile, you still have EDS.
@S M Dr Mike was photographed unmasked on a boat party in Miami. Like with a ton of people. He confirmed it with him and made an "apology" but his apology sucks. he's just a massive hypocrite who has spent months saying you shouldn't do this sort of thing.
I've got HSD and was late diagnosed at age 30, now 32 and I've been suffering from chronic pain and many other things since childhood and was repeatedly told it's all because bad posture, weight, imbalances, bloods looked normal. IT got to the extent where my docs just dismissed me saying it's in my head. and nothing is actually wrong with me.
Dysautonomia - a big word I just learned. I can say that getting older, and gaining weight and higher blood pressure really helped me. Not the best plan though, for most people.
Multiple people in my family have EDS, but I keep putting off getting diagnosed, I have the hyper mobile joints, tore a ligament in my ankle 5 years ago and still have swelling, foot doctor touched my feet and immediately noticed I have hyper mobile joints. I’m mostly putting it off cuz my mom had to fight to get diagnosed with EDS and it was exhausting watching her go through all the doctor visits and waiting to see a geneticist. Also, every time I move you can hear cracks or pops throughout my body, but I can never feel them, does anyone else have that same issue?
@@IzzyKDNA Thankyou Izzy. Now i know that there are more people with disabilities and illnesses than i thought. Great that they are accepted to work there!
Both me and my daughter have eds, pots and mcas, exactly the same, wish i could of past on something better to her then this horrible diesease, but i didnt find out what it was till i was 42, shes 21, but i notice how she had alot same issues growing up that i seen in myself, i went to doctors over and over, more than 20 times for pain and stomach issues, never found anything, was so frustrating, it wasnt until they diagnosed my daughter that they finally was able to figure out and diagnosed it for me.
@@angiect3791 I fell 8 years ago and needed knee surgery. It was the surgeon post op who asked if I had every been diagnosed with hEDS. I told him I had never heard of it before. He was convinced that I had it. Then I did my circus trick and he said, "Look it up, talk to your Doctor. She can call me. I have no doubt." When I did, every year of my life that I could remember was in print and on the web!! My podiatrist, off all people, was the first person to actually put it in my record. Just by my pictures of hEDS effects on feet. *What battles we have to go through!* I knew I didn't have fibromyalgia.
@@angiect3791 you and me both! Why was I always in pain? Oh it's puberty. Then it your period. Then, it was because of stress. Why am I dislocating my shoulders and having to go have them reset? Oh, you're not strong enough. It wasn't until that knee surgeon when I was 36 that I finally had a place to look and spring forward. He may have hit on me, but I don't care. He apologized when he realized how we knew each other. *That man, in a way, saved my life.*
I don't have EDS and I could never fathom what your going through. But when you mentioned about the inconclusive blood results and the anxiety. I'm being treated for MCAS and my doc is like are you experiencing any stressors nope! I could care less about the fact that my throat randomly closes and it's getting worse. Or that I can't eat because it either makes me extremely sick or as soon as something touches my tongue it swells and so does my throat causing me to choke. But no I'm fine and dandy just another day of defending "my life" to a doctor. Because that's what it is. It wrecked my lungs, and my stomach dont get me started. Sorry about the rant I just wanted to say sorry about what you're going through and that I understand to a degree.
The gentleman that can pull his skin to extremes is called Gary Turner. He is a sideshow performer and holds the current Guinness World Record for the stretchiest skin, caused by classical EDS.
I'm sorry, it can feel weird to be told you have something but that they don't want to make it official, as it can make you feel a bit like you're in limbo.
Your doctors are being being kind life insurance increases your premiums for medical conditions you have even something common like anxiety and depression
Insurance shouldn't be as important as getting a accurate diagnosis on record immediately. In fact that could be considered insurance fraud. but more to the point, this shows how fracked up the current private insurance company system is from medical to life insurance to anything else. Where profits are more important then lives.
@@loganskiwyse7823 Yeah but that's not the doctor's fault, it seems like they're fudging things in the patient's favor. Lot's of doctor's aren't exactly thrilled about how things are run either but that's reality. At least some of them try to work the system in favor of their patient. I've had doctors be like, well you could do this... *looks both ways sneakily* or if you do this, this, and this over here it's 10X cheaper and exactly the same.
I've known I have double jointed thumbs, but my main concern is my knees giving out sometimes, my blood pressure suddenly dropping sometimes and my shoulder continuing to hurt after months after I tripped and fell... I actually want to go to the doctor, but can't unfortunately...
I'm actually going to my doctor about chronic pain (fybromyalgia, EDS, or possibly something else) and I've been running through the criteria for both fibromyalgia and EDS and I seem to fit both.. (EDS: Stretchy skin, chronic pain & fatigue, hybermobility, stomach issues GALORE) (fibromyalgia: sleep issues, chronic pain, chronic fatigue, stress, etc.)
Your story is EXACTLY the same as my start. I was 8/9 when my knees started hurting so bad i had to stop playing soccer. And my first full dislocation was my left knee 😂
If you do not have a genetic doctor in your area, what other doctor can you see to be diagnosed? I have possible POTS. I am diagnosed with idiopathic intracranial hypertension and a cranial leak. I am seeing a pattern of HEDS and these conditions... I have many symptoms!
I am currently 16 and between July 31, 2018 and August 31, 2020 I had a total of 4 knee surgeries, an orthoscopic lateral release (I'm pretty sure that's what it's called) on both of my knees and an MPFL Reconstruction with a Tibial Tubercle Osteotomy on both knees. Currently I am discussing with my surgeon (who I love so much, he is amazing) about what to do about my constant rolling/dislocating ankles, wrists, and fingers.
Every member of my family is either hypamobile of eds. My skin stretches but dosnt spring back. Hips are hypamobile flat feet. Daughter has eds and pots
A lot of drs do not like it when you are correct. They dont communicate well. In the end I was polite but need up in the ER for Pots. And I will also be tested in a few weeks for Ed's. If you live. With all the symptoms and they see you for 5 seconds, they should atleast listen. I was accurate in the end with sever pots. Now he wants me to exercise and build stamina. The fainting part doesn't phase him. What should I do? The meds are starting to help my HR and my BP
I don't know if I have eds but I can't really do anything about it because my parents don't believe me. I've had loads of cracks and pops throughout my body mostly in wrist, shoulder, knees, and back, one that mostly hurts is my back, am I ok?
You do a great job explaining! I just found out i have some cervical spine instability. I have dysautonomia and Lyme also. Going to have genetics test soon. Just curious do you know if the 23 and me looks for EDS genes?
So many people have to fight to be taken seriously that i personally believe many give up before finding out what's really wrong
it can be so so hard to not be taken seriously
I’m right about at that point. I’ve had multiple doctors say things like “you probably have EDS” and “there’s a good chance your stomach motility is low” and then decide that it’s not worth their time to test me for these things because they don’t believe it’s significantly impacting my life. My current diagnosis are “chronic pain and nausea,” but no one can tell me why.
@@summero1554 I'm 3 years into my journey doqn diagnosis lane. And it's sucks having the inside of your body fall apart but look healthy most days to people who dont know you.
@@sarahcooper8705 It’s probably been about three years for me too, it’s comforting to know there’s other people going through the same thing, but it sucks that there’s so many of us that aren’t taken seriously.
@@Void-b7r I’ve been to a geneticist but it was through children’s hospital (I’m 18) and I’ve never been taken seriously there. They only tested for HEDS and while my joints hyper extend they don’t go far enough to meet the criteria. My mom asked to do the full panel and the doctor agreed. When we got the results back it showed that I had only been tested for vascular EDS and marfans, two things we were already pretty sure I didn’t have. When I was filling out the checklist before my appointment I could mark almost every symptom, but I guess those symptoms don’t matter if you don’t meet the criteria, at least according to children’s hospital.
I mean, DR. Mike's video could do a better job addressing the biases that lead to this kind of condition going underdiagnosed. I've heard lots of stories of EDS patients not just going misdiagnosed, but outright dismissed as dramatic or faking.
Agreed!
Yes!!!!!!
That's where I am. while I pass the criteria for hEDS that may or may not be the diagnosis in the end. But until I can get a doctor to take me seriously I'll never know what is causing so much joint pain and instability. I also think it's harder due to my age. about to turn 56 and wasn't even diagnosed with Autism till 54. hEDS IS a comorbidity of autism but it's far to easy for doctors to write my joint pain off as arthritis. I may be wrong here, but I've never meet someone that is both hyper-flexible AND has traditional arthritis.
think people generally have a hard time getting chronic pains diagnosed.
I fully agree. Took my 37 yrs to get diagnosed. Growing up i got alot of doctors thinking the dislocations were self harm or abuse. And of course niether were the case.
For twenty-six years I was just a complainer and clumsy. My flexibility and stretchy skin was a funny little party trick. When my daughter had the same symptoms, I missed it because I didn’t know these things were an issue because I had always been dismissed by every doctor. It wasn’t until her EA at school told me to Google EDS because her grandson had it that I even found out what it was. Getting my and my daughter’s diagnoses was… life-changing.
I never thought I would feel relieved to know that I had an incurable life-long disorder but just to finally have an answer meant everything to me.
The thing with family history is that if you have an underdiagnosed condition, there's a pretty high likelihood that your family members haven't been diagnosed. I currently suspect I get it from my dad, since he has chronic joint pain, but I've never heard him mention anything else that would indicate EDS. Family history should be something that helps indicate EDS if you happen to have diagnosed or presenting family members, but a lack of that history shouldn't cast doubt on whether a person has EDS
especially not just considering its not as well known of an illness, but putting classism and racism in the equation as well, healthcare still isnt always accessible. A lot of people in my family (including myself) struggle to get adequate treatment due to being poor (whether it is sub-par healthcare with terrible doctors and limited options or just no insurance) and being fat so many people are neglected for their health in my family because we are all chunky af and not taken seriously. if someone who has EDS is in a family with a lack of access to healthcare (or previous lack of access in other generations), it also makes finding a family history harder just adding adversity and systemic medical oppression from things like classism, racism, fatphobia etc into the equation. long story short, i hella agree with you that you can easily have a family history of EDS with no way of knowing.
A diagnosed family member is one of the various criteria for an hEDS diagnosis, but as you say when it's so underdiagnosed to begin with it doesn't really matter if they have symptoms as that's effectively meaningless. Not everyone has contact with their family either. There's also the issue of them changing the criteria a few years ago to try and narrow down the genetic mutation. Many people got their diagnosis before the criteria changed and would no longer meet the criteria for a diagnosis now, yet they keep their diagnosis and others can no longer obtain one. It's a very frustrating situation when all you want is an answer so you can get the help you need to live your life, but more often than not decades are wasted bouncing doctor to doctor, none of whom communicate with each other or have a clue what they're doing, all whilst losing mobility, independence and dignity.
Touche!
Very very true. I have hEDS and osteogenesis imperfecta (OI). Originally I thought I only got the OI from my mom and not the hEDS, but over the years I've realized I probably got it from her. She has such severe joint pain, and I never thought of her as being hypermobile, but neither did I before I actually got tested and was found to be profoundly hypermobile.
This is an excellent point and likely means a lot of people with EDS aren’t meeting that part of the criteria. I’m the first person in my family to be diagnosed, and for years I didn’t know which side of the family it might have come from because while both my parents have some medical issues (RA and other joint pain for my mom, a bunch of the same symptoms as me for my dad *except* the joint stuff, like gi issues, and migraines on both sides) neither had clear obvious symptoms of EDS.
I finally found out just last year when my aunt was visiting that my grandmother (dad’s mom) was hypermobile, had extremely soft skin, etc. But of course she was never diagnosed with anything. Considering how hard it is for people today to get diagnosed (I was diagnosed at 30 after a lifetime of symptoms), and how the condition seems to be more common in women, who are frequently taken less seriously by drs, it’s no surprise my grandmother never had a dr take her issues seriously considering how much more sexism there was in medicine back then (I mean my mom’s obgyn was still telling her pms wasn’t real well into the 80s).
Considering how long it takes most people to get diagnosed and how much more “rare” it was considered until recently (likely do to severe under diagnosis) I imagine a lot of people have family members/ancestors who did in fact have it, but were never diagnosed or even had their symptoms documented.
Then there’s the gender issue: EDS seems to be more common in women*, but presumably can still be passed on by male family members who carry the gene. Like I said above, while my dad has a lot of the same non-joint symptoms I have that have since been attributed to EDS, he lacks the defining symptom of hEDS: hypermobile joints, so he certainly wouldn’t be diagnosed. So if someone inherits it from male family members they’re also not as likely to have a documented family history of EDS.
*An interesting aside about the possible different presentation of EDS in men: I don’t know if this has been researched at all yet, so this may just be anecdotal for the moment, but it’s possible EDS may just be more *symptomatic* in women, and men with it aren’t just asymptomatic carriers but actually may have some of the symptoms. I know several trans men with EDS who were diagnosed before they transitioned. Once they begin taking testosterone as part of their transition, they all noted their joint hypermobility issues improved, but other symptoms remained.
It’s pretty fascinating and suggests there may be a hormonal component to the severity of hypermobility in EDS patients. If it hasn’t been studied yet, I hope it will be soon!
I was 15 years old the first time a doctor told me “your ligaments just seem like overstretched rubber-bands”, but I wasn’t diagnosed with hEDS until *12 YEARS LATER!*
me 40 years later! no one believed me
One thing I am SO GLAD that you both mentioned was the fact that not all hypermobility is EDS and that there are other things that cause similar symptoms!! I think one thing that has come with more awareness of EDS that I see a lot online is people who seem to have benign hypermobility or something that immediately jump to "omg do I have EDS?? I bet I have EDS!" Theres dozens of posts on forums of people assuming they have EDS when what they describe is normal joint hypermobility in ~20% of people. Im so glad that EDS is getting more awareness, but its created a bit of concern for me seeing a lot of people who either are mildly hypermobile with no other symptoms worrying about it and even people flat put self diagnosing.
Like 👍 if you wanna hear more about the genetic counseling career. Izzy, I’d love to know more about your career path and how to become a genetic counselor. Also jobs for people with chronic illness, things like that. Gosh all your videos are super helpful.
Ah I'd love to talk more about it! Did you see my two videos on it so far? ruclips.net/video/I472YYyEm6c/видео.html ruclips.net/video/F7H5d5wL85w/видео.html
@@IzzyKDNA i did not. I will watch now! Thanks! I hate when my notifications don’t come in. Ugh RUclips.
@@amber3574 getting the notifications to ring the way you want... grrrr takes months or more.
I have to continue to redo the notify all bell every other month on Izzy's channel alone!
@@OfficialMyxomatosis Yes exactly! It’s so annoying. And it’s always the videos I’m super interested in that I wind up missing lol.
@@amber3574 DITTO!! AAAHHH
Dude you are so fast!! I wish he would have covered some of the stuff outside the really stereotypical stuff (like pain, not as stretchy skin, and being misdiagnosed with psychological disorders) But I'm still so glad he covered it!
Yes same! I'm still SO glad he covered it!!! If I were to add one main thing to his video, I wish he mentioned chronic pain, as that actually tends to be the primary concern for most
I only have velvety skin, but not stretchy, so I always thought I couldn't have EDS.. I also got my hypermobility diagnosed very late... but after those pieces began falling into place it was easier for me to again suspect hEDS.
I have hEDS and my skin is BARELY stretchy (and only in certain areas around my face), but I have the velvety skin, my whole life people have commented on it
Same here as well! I always have some of the softest skin people have ever touched and my skin is slightly stretchy. Maybe someone else would notice, but I never did until I started looking into my hypermobility and comorbidities. I have had wrinkles on my forehead and neck since middle school though. 🙄
I'm a velvety too 👋🏻
people have always commented on my skin being so soft, and on the back of my hands it's much stretchier than izzy's for example, yet doctors say it's 'normal' because they have that image of extremely stretchy skin stuck in their mind.
@S M Ppl will have commented on it most likely
My cardiologist said to me on my initial visit "You know Ehlers-Danlos is not something I see every day. I assume your case is very mild"
Me: I dislocate my shoulder 12-20 times a day
Cardiologist: ... _oh._
Touche!
You are speed. This is a quick react.
HAHAH i tried
The reason I still don't have a diagnosis is that doctors kept insisting my labs are fine, and only other testing really showed things that are wrong. All my diagnoses are consequences of EDS, but most doctors have written me off as hysterical or drug-seeking
When I first told my doctor I think I might have EDS she said "oh, you don't. people with EDS can't walk and only use wheelchairs" and she didnt even listen to me://
My WHOLE family has EDS and not one of us is in a wheel chair 🙄
@@libbydeland yeah i knew she was wrong but she literally didn't even let me speak. i had a list of symptoms written down that are on the EDS checklist + i score 7 in the beighton score but she literally didn't let me speak:)
I went to a docter saying 'i think i have eds', and she said: 'thats not possible cause you have chronic pain and that is not a symptom that comes with eds'. I was like: do you even know what eds is?! Chronic pain is symptom nr 1!
another doctor told me i was too fat to have eds from being slightly overweight...like hello maybe it's because i'm in pain everywhere all. the. time.
Why dont drs listen, this infuriates me. I have severe pots and my sts wants me to exercise to build stamina. How does one do that if you faint from the floor!?
I was so happy he did a video on EDS :)
me too!!
me too!
I was diagnosed with EDS this past September, so I’m very new to all of it. This is one of the many reasons why I had to retire from the Fire Dept. Your videos are always so informative and I SUPER appreciate the work you do.
Thank you!!!
That sweater color look so good on you! :)
Ah thank you!
This was a great reaction video! I definitely agree with you that he should've briefly discussed the co-morbidities because of just how overwhelmingly prevalent they are. Struggling with chronic pain, hyper-mobility, difficulty healing, dizziness, fatigue, and GI issues, I also always felt like I had way too many things wrong with me for it to be just a bunch of random health problems, but never knew what. People forget connective tissue. is. everywhere. I had no idea that it would be my cardiologist testing and treating me for POTS who would actually take time talking about my chronic pain and hyper-mobility who would suggest to see a geneticist for EDS. We forget that specialists tend to kind of just center in on their one area of expertise when the answer is so much bigger and deeper than one thing. Had it not been for my cardiologist already familiar in POTS being very prevalent in EDS individuals, I don't think I would've gotten any referral anytime soon (for reference, I have been seeing doctors and misdiagnosed with fibromyalgia and chronic fatigue syndrome for eight years, so it has been eight years of running in circles until my cardio and me becoming aware of EDS through him and online resources like Izzy, the mighty website, etc)
I also was originally suspected of EDS by my cardiologist, for a valve issue that was unrelated to my EDS (it ended up resolving with time). He then referred me to an orthopedist who had never heard of EDS and the two of them ended up doing my Beighton scoring together because of how new the condition was to them.
Weirdly enough, the D.O. that’s my physical therapist has had so much training on EDS, so he’s been one of the best resources (not that Drs of PT knowing about EDS is all that wild, it’s just a little crazy that he knows the most even compared to physicians in joint specialties who have been in their careers for longer than him, and even internists who don’t know how to treat EDS other than saying inactivity is safer than exercise, even though joint strength prevents sub/dislocations 🙃)
Same! Every doctor commented on my lax ligaments, even the doctor who delivered me when I was born predicted that I would have "loose ligaments," but none of them ever connected the hyper mobility to EDS. I had to do the research and discover the syndrome myself before the 10th (?) doctor finally confirmed it at age 30, when osteoarthritis had already set in.
I wasn't diagnosed until I was 50 ! Even then it only happened when a friend sent me the hEDS checklist and I took it to my rheumatologist of 20 years !
I had had back trouble since a child, had to have my knees replaced and one hip replaced at a young age due to severe osteoarthritis diagnosed at 18. Also had an RSI /Overuse injury at work where I was labelled a 'malingerer' but still ended up on disability and misdiagnosed with fibromyalgia for 20 years !
WTF is wrong with all my doctors to miss all those symptoms !
Same here. I’m in the UK and only got diagnosed because my adult DD was diagnosed. I was 57 and have had a lifetime of classic symptoms which were all treated separately without anyone linked them together.
I still get this crap AFTER being diagnosed!
Ok, I really love both you, and Dr. Mike. You guys should totally collab on ehlers Danlos, genetic counseling, and related diseases
LOL I wish
You mentioned how a doctor told you that EDS only impacts your heart and eyes. I relate to this! The rheumatologist I initially went to told me that I can't have EDS because my aortic valve is messed up instead of my mitral. I'm waiting for a referral to another rheumatologist.
They are so wrong. Maybe a geneticist?
42 year old disabled veteran and I'm going on procedure 15 on various joints. The last two were my shoulder 2021 and elbow 2019. Insane that I've been looking forever and finally found this subset of diseases. Thanks for the information. So frustrating to have doctor's tell you your pain is all in your head. Yet I've had dislocations since my teen years and shoulder and knee subluxation throughout as well as the stretchy skin and hyper mobile joints. And yes I've had doctor's mention the hyper mobile joints and just not connect the dots. Thanks again !
We thought I had Hypermobile EDS or Type 3 as it used to be called....I had genetic testing and we now know that I have Myopathic Ehlers Danlos Syndrome. It has the genetic COL12A1 variant. But it has cross-over with Muscular Dystrophy between Bethlem Myopathy and Ullrich Myopathy. I'm having an MRI w/contrast tomorrow to try and sort out a good spot for a muscle biopsy to confirm or rule out the Pathogenic active myopathy. The myopathy can appear at any age-making it challenging to sort out. It's been challenging even having a diagnosis because the favorite line of physicians is to tell me "You're too complicated!".... EDS has come a looonnnggg way in a relatively short amount of years, but it has a long way to go. Honestly, it would be much better to hear physicians "honestly say they don't know." I have the co-morbidities of EDS with Dysautonomia & Mast Cell. The best advice is to get tested through a legit genetic company like Invitae or Fulgent. Avoid the Ancestrial type testing. It's not the same as medical genetics. And the EDS panel through Invitae cash paying price is $250.00. It usually can go through your insurance company and worst case scenerio, many people qualify for their patient assistance program and can pay as little as $100 out of pocket. :)
There is a myopathic type of EDS (mEDS) - so that could explain why you have all the zebra traits
I love Dr Mike. He absolutely makes sure to actually know and understand what he is saying so he can give the best advice possible
I'm almost certain that myself and both of my children have hEDS. I've been suspicious about just my son for some time. But more and more things are adding up, for all of us. They were both diagnosed with POTS, and I have unexplained tachycardia. If I go into it all this will be a book. Lol. Anyway, I mentioned it to his doc for the second time. Her response was that those disorders were really obvious and he didn't have the symptoms. So now the hunt is on for one who will actually take us seriously and go through the criteria. BC we all pass them, except ironically maybe me bc I was diagnosed with RA 10 years ago since no one could figure out why else all my parts hurt. So the other disorders thing might get me due to a misdiagnosis. All very frustrating. More frustrating that I've been through all these RA treatments wondering why they weren't more effective. Your videos are very helpful. Thank you.
So I meet a lot (and I mean A LOT) of the criteria for EDS and have been fighting with my doc for over a year to find out what is wrong with me. Today he tried to diagnose me as just having depression. I finally told him I wasn't leaving until he referred me out because my pain is real, it isn't in my head, and I want something done about it. I get to see a neurologist and hopefully that will give me some answers.
Hi Izzy! ... Although I have not been diagnosed with EDS, I believe after serious research, I have it. Almost everything in my body has prolapsed ... heart valves, uterus, bladder, bowel. My ankles have always rolled when walking. When I was young I could pull the skin away from my elbow several inches...like the guy early in the video. I could also pull my fingers all the way backwards. As a kid, I would put on a little show for my friends, they couldn't do any of it of course. I did not realize that this was medically significant at the time tho. I was always a sickly kid, and extremely underweight although I ate like a horse. I would pass out momentarily when I stood up. I also had low B/P. I have some type of bleeding disorder too, with easy bruising and petechiae. My mother said "yes, we are a bunch of hypermobile people" She had taken a few yrs of dance lessons as a child and could still do the splits, and pull her leg up over her head into her 40's. She could also touch her tongue to the top of her nose! I started having constant subluxations when I was early 20's. My chiropractor has to re-adjust me after giving me therapy and an adjustment just minutes before. He said jokingly.."I'm going to have to pour Elmer's Glue in you to hold you together!" LOL My problem is, now that I am 65, and I just found out about EDS earlier this year, I am no longer flexible. I have a ton of arthritis issues, the worst in my spine. I also have a slow developing form of ALS. So I have showed my new doctor all these problems and she did the test in office and I can no longer pull my skin way out, touch my hands flat to the floor (although I did pretty good for such an arthritic old lady). So she said I think you just have Fibro and that is what I am diagnosing in you, and Rheumatoid Arthritis. My former Dermatologist said in 1999 "You very likely have a Connective-tissue disorder. He's retired now. I've mentioned these things over the years and no doctor has ever put the two + two together. Do you know of any older/elderly people that present similar Izzy?
Hey Bonnie! While I don't know anyone personally, I've seen a lot of comments from people around your age who have a diagnosis of EDS and who aren't flexible like they used to be, and it made it harder for them to be diagnosed
@@IzzyKDNA Thank you Izzy! Maybe I'll find a few on FB I can ask. God Bless!!
While it can certainly make it harder to get a diagnosis there is a part in the criteria which takes past-hypermobility into account
There is a Facebook group that is super helpful and very wide reaching, there are many members in Australia, where a lot of research is being done and there are many doctors. I'm in my early forties (in the US) and just beginning to experience some of the stiffening and loss of flexibility you've described. I've done nothing to actively maintain it, and in fact I'm still doing grievous injury to my ankles, for instance; in November I stumbled off a kerb and dislocated my ankle so badly, the EMTs who picked me up were certain I had broken it, based on visual assessment. By the time I had some morphine in me (because *wow* did it **HURT**) and had settled down a bit in the ER, I didn't even notice it slipping back into place, I just realized I could flex my ankle at one point!
@@bonniemoerdyk9809 Facebook group: "Ehlers Danlos Syndrome type 3" Good luck!
Maybe he choose a male, cause he has a male patient with EDS.
1 1/2 month ago he posted a "day in my life" video and said he had a male patient with easy brusing and that they will find out if it's EDS.
His old video was the first time I heard of this illness and in 10 days I'll have my appointment at the centrum for rare deseases to find out if I have hEDS, cEDS or just HSD
thx Dr. Mike!
and of course thx Izzy for all the things I learned and that made me laugh watching your videos the past 6 weeks
I'm a massage therapist, and I'm finding it so difficult to continue on with my job with EDS. I'm constantly putting my hips and back out of place, and my fingers and wrists hurt so much.
Oh my gosh this makes me so happy to know that Dr Mike talked about this and brought attention to it! I have POTS and EDS and when I got diagnosed I did so much research and wanted to share all I learned about it and raise awareness but it was hard and not many people with a large platform like his talked about it before. Its so good to see awareness for it being brought up!
I’m currently in the process for getting an ehlers-Danlos syndrome. I’ve been in physical therapy do to a brain injury and I brought up my frequent subluxations. She also noted my very hyper mobile joints and the fact that I come in with a new bruise every session. I also have gastroparesis she then brought up EDS and said she would talk to some of the pediatricians at the place where I do physical therapy. I also had an orthopedic who did a beighton test and I scored a 9/9 so he’s referring me to a geneticist. I also had a recent GI appointment who talked about my history and is also referring me to a genetics so hopefully I get some sort diagnosis soon
Another aspect of the family history aspect. I have many of the symptoms. I have spoken to Drs since I turned 18 about my symptoms and blown off. (My mom thought I just had a low pain tolerance as a child when I complained of joint pain…). I have always bruised easily and I was told “some people bruise easier than others” when my lab work was normal. Now that I am seeing hyper mobility in my kids and one has a cardiologist suggesting a tilt table test for POTS and another seeing a rheumatologist for hives and inflammation (at 9) I finally just asked the PCP about EDS and asked if there could be a connection between their hyper mobility and these other weird symptoms everyone of us has to varying degrees.
To his credit he said he was going to research and get back to me.
I love it whenever Dr’s say stuff like that!! Mine did a similar thing, I told her I had a family history of EDS and I have a lot of the seemingly unrelated issues, she said, “I’m not very familiar with EDS, let me look at what the diagnostic criteria are and we can go through it”. We spent the next 10 minutes just working through all of them, she gave me a bunch of referrals and said she might send more once she can do some more research into it to see how it’s managed. My respect for her went up 1000%, so happy to be working with a doc that doesn’t have an ego and can say she doesn’t know when she doesn’t know!
I was so bummed when the photos leaked of Dr. Mike partying with tons of people in Miami in midst of the pandemic. I wish he addressed it, but I suppose since it's true he'd just let more people know that he acted irresponsibly. So disappointing when people are like "do as I say, but not as I do."
Human nature, we forget our own risk factors to any danger in favor of having fun and only later recognize the potential consequences. Or even if you know, can't change your behavior. Smoking might be the best example of this in the medical community as a whole. For decades doctors would tell their patients to not smoke, while them and a large percentage of their staff still smoked ! Humans are very bad at risk assessments and unwilling to change behaviors even when they know the risks until forced to by the community at large.
Look at the huge number of people that won't take masks seriously during the current pandemic. A large portion of them present legitimate information about why masks do not protect you from getting sick while missing the point that has nothing to do with why masks help prevent the spread of Cornoavirus. (pardon if i spelled that wrong).
I had dental surgery just last week, and the doctors own office had me sign paperwork that completely misrepresented the risk factors on why we need to wear masks. When I tried to point this out to the staff they mistook my efforts as being anti-mask when in reality I was trying to get them to present medically accurate information to encourage mask use outside that specific clinical setting.
He has since addressed it.
@@libbydeland on a second channel tho…
I really love your channel so much! I found it a year ago just after my orthopedist told me he suspected EDS and referred me to genetics. Now I’m in the process of getting blood tests and Echos to determine what type it is. I really appreciate you doing this and having this channel.
I'm so happy to hear that my channel has been helpful to you!
Even though I know it’s not an easy path, I don’t feel so scared after I watch your videos anymore. I just want to say, thank you for that. 😊
I didn’t get diagnosed till I was 37, I’m turning 38 tomorrow actually. I didn’t start having painful symptoms till I was in my mid 30’s. And my MCAS didn’t come on till I was 36. So weird how this came about! I noticed something wrong around my birthday last year when I had horrible chest pain , (Costro) and my doctor-friend from church is the one who finally put all the pieces together for me! I do have Cranialcervical Instability and those symptoms didn’t come about either till I was 37. I was always hyper mobile as a kid and was in ballet, gymnastics and cheerleading. I am feeling the hEDS pain a lot more now as I’m getting older. My ribs pop out of place just this past year as well. Has anyone else had the painful symptoms come about later-ish in life?
Wow. I wish I had been as aware as you are at 23! I was diagnosed with fibromyalgia when I was 14, hypermobility (parading as fibromyalgia, which was incorrect, I have CPTSD which often has a physical manifestation of fibromyalgia) diagnosed at 28, and EDS finally floated for the first time at 33, I believe, but quickly dismissed because my skin didn't stretch far enough. I immediately recognized EDS because my cousin's daughter has it as well, and has the severely stretchy skin (which would in fact bust open in horrific injuries as a child, she has crazy discolored scars from healing massive stitches). She also had organ problems, was born with 3 kidneys but only one really functioned, and not well, this was apparently due to the EDS as well. And I'm not certain if this is related or not, but she had a large brain tumor removed in her mid-twenties, and it had been affecting her personality. Regardless, I began to suspect perhaps I did have EDS when I did a little research on my own and looked at all my symptoms and comorbidities. So I got an appt with a rheumatologist and thus began a 7 year stint as her teaching case every 2 months. She was amazing, really. Oversaw all my care with my other doctors, made sure I was following up on everything...she retired in Dec 2019 and I'm still in the process of finding a new Rheumatologist, my area has a bit of trouble keeping them, for some reason. I have POTS, Osteoarthritis (juvenile onset) and RA, my feet are an absolute mess (I've had 9 orthopedic surgeries, and 8 of them have been on my left foot/ankle, including two emergency surgeries this year, when my foot decided to reject hardware installed Sept 2019, and screws were literally coming unscrewed and poking out through the skin, creating an open wound that led into the bone, and ultimately caused a staph infection in the bone, which led to a week-long stay in the hospital during Covid, a PICC line and six weeks of IV vancomycin once I was discharged, and another six weeks on oral antibiotics after the PICC line was removed.) TMJ, plantar fasciaitis, easy bruising, extremely bad eyesight, migraines, IBS, CPTSD, fibromyalgia, anxiety, depression, adult-onset ADHD (due to the CPTSD), insomnia. The PICC line was extremely high maintenance, as well, possibly due to EDS, oh, and I'm an extremely hard stick for IVs and blood draws, likely due to EDS. I also am recovering from Covid. I didn't get sick enough to be hospitalized, but I had a lot of trouble breathing and barely ate for about 10 days or so. I caught Covid because I was caring for my brother who has spinabifida, as his aide was sick with it as well. We are both finally on the final edge of this, 🤞, its been since 11/9!
Before I found your videos two years ago I didn’t even know about EDS, but after watching a couple of your videos things started to make sense for me, but EDS is so unheard of in Australia that when I went to the Dr to ask about getting tested they didn’t know what I was talking about, I’ve had so many Drs google what it is then tell me that I don’t have EDS, without even testing me, but after two years I have finally found a Dr who believes me and is going to test me.
I also wanted to say thank you for making videos about EDS because without your videos I don’t think I would be any closer to knowing why I’m in pain all the time and have been for over 13 years, and I know you may never see this but thank you Izzy.
Really enjoy the passion you have in the medical field. I watched some of the pain mgmt videos. To me pain is THE worst, and hey despite your physical issues you still have that superior natural aesthetic:) . It really shows that good lookin girls and guys can have mental or physical struggles contrary to some beliefs from an outer perspective. hope your havin a great hanukkah.
Medical texts always show pictures of the abnormal features of genetic diseases including EDS. Not people who look pretty normal.
Sometimes what I see with myself with EDS there’s more, way more bruising and thin skin than flexibility but when I was like 2 or 3 years old my ankles went so inward the looked like they would be touching the floor and since I played baseball this made my nees hurt really bad so I got ankle braces. But just the fact that someone that at least talks about this stuff really just makes me happy.
You seem smarter than me I've just turned 22 and only just started pushing for a diagnosis as I've been struggling my whole life like many people but I just went on mental doubt on my self but since watching your videos and also talking to my nurse friend I do finally have sort of a diagnosis of hypomotility and fibromyalgia and also still looking in to EDS but as there's been none else in my family with the condition (my dad's side for medical history is unknowen) doctor's have just left it there but I'm still on a journey thank you for your videos and bravery always sheds light when needed
Yay Dr. Mike for covering EDS 🙌🏻👏🏻🙌🏻👏🏻
It made me so happy!!!
Thank you so much for your reply video. EDS family ❤️
I'm not flexible. At all. Maybe that's why I wasn't diagnosed until 34. But I fought hard to get a diagnosis. So much of my life makes sense now. I have kEDS.
Haha i was diagnosed with lax ligements, hypermoblity, joint pain, and severe flat feet at 13. But they just shrugged and were like 'how bizarre'. Wasnt till i was 24 a doc diagnosed me with EDS.
Hypermobility issues are much more present around me than I thought. Every week I find new people with problems and all of them are hypermobile.
I just want to say I love you so much and I thank you for all of the information and experiences you've learned about and dealt with! You've been such a light in the darkness for my family ❤
Love your videos - thank you for sharing. My daughter has EDS. I love learning about how to support her in her journey.
I find your videos so helpful and interesting. I’m going to see a geneticist next week to get tested for EDS due to all my symptoms. The information you provide is very important and helpful to me. Hope you’re doing good. ☺️
I saw his video this morning and I'm so glad you are making a video reacting to it!
I was so happy to see a well-known medical professional talking about EDS! I hope it brings more awareness to other medical professionals
I have actually had a doctor tell me EDS is not genetic and cannot be passed down. And that comorbidities I have, don't make me high risk with Covid-19, when they do, and all my other doctors were telling me it does. I have so many stupid doctor stories, it's sad.
That Dr is a true idiot
@@sarahserenity3872 yup! That's why I saw him only the one time.
I also have several idiot stories sadly lol. One Dr I tried telling about the Beighton scale and he didn't care at all. Another Dr told me if I had REALLY dislocated my hip, he would have to put it back in for me bcuz I couldn't do it myself....
That's the fastest react video ever 🥰🥰 I was so so so excited when I saw his video. Great video Izzy 🥰
haha i tried to be super speedy!
I kept getting all these little diagnoses like IBS, GERD, fibromyalgia, etc. Abnormal tooth formations, hemorrhages, easy bruising, 10/10 Beighton. Grandmother and father have the same. When I discovered EDS, I brought it up to my doctor and it was like a light bulb went on over her head. She actually exclaimed “Yes! That explains everything!”
I haven’t even started watching it but thank you so much already!!
My mom had recently told me that when she was younger her doctor had tested her for eds but the results were inconclusive. It truly makes me wonder sometimes considering how much I personally can struggle with things that are easily stated as symptoms of eds. I don’t know weather I should bring this up to or not as I’m not always taken seriously on these kind of topics.
I've been back & forth to my doctors for around 5 years now and only in the last 6 months I was told I have hypermobile shoulders, knees and elbows. But I also have internal issues etc but all my scans, bloodwork and check come back that I'm healthy and nothing is wrong. Some doctors just fob it off as it's in my head and non existent 😡😤😥 I'm in the UK. Just waiting on an appointment for an endoscopy to check my throat/gut and a rheumatologist appointment
So I went to the rheumatologist and the doctor agreed that I am hyper mobile and said I could have EDS or JHS, do you think it’s worth it getting a definite diagnosis?
I would say so, but everyone is different and there's not necessarily a right answer. Here's a video I made about whether or not an EDS diagnosis is "worth" it: ruclips.net/video/GStXLLP3cys/видео.html
@@IzzyKDNA 8
The human body is so complicated and fragile it’s amazing we survive one day
lmao i basically told my doctor about this and i also have a lot similar symptoms. But he cut me off even before i finish explaining about it. And now i'm to scared to reach for help, even i'm in so much pain everyday and it is affecting my life quality
I'm so sorry your doctor didn't even listen to your symptoms and dismissed you like that. You deserve to have a doctor who actually will listen to your concerns. I know it's probably really hard to want to talk to another doctor about it given the bad experience you had, but just know that there are good docs out there, and i really hope u can find one who will listen
I was told by a doctor that I didn't have VEDS because I couldn't put my thumb on my wrist.
My rheumatologist doesn't know what EDS is....my cardiologist diagnosed me with POTS & EDS.
I had an awesome dr. She said always said I had something she just didn’t know what it was…I always apologized to her that I must seem like a hypochondriac and she would always reassure me I was not and not to let any doctor say I was… I finally got a diagnosis after both my girls were seen by a geneticist. I went back to my GP and she said she didn’t know much about it but would study up on it so she could help me as much as she could.
Totally agree with everything said in this video! I'm glad Dr. Mike raised awareness of EDS. My symptoms were more vague and random -- chronic debilitating fatigue, early onset bilateral knee osteoarthritis, chronic pain, gastroparesis, dysautonomia, but normal blood tests. I had a lot of muscle strain, but no dislocations or dramatic skin hyperextensibility (mine is mild, like in this video haha). These symptoms also mainly started after I developed a pneumonia and then never recovered. I was frequently dismissed as having a psychiatric illness because my blood tests were normal and didn't explain my severe symptoms. Finally I saw a chiropractor for back pain and then she examined me and found hypermobility in my joints. Suddenly a lot of things I had dismissed made sense. The funny thing also is that if you have a hypermobility disorder, a lot of the hypermobility seems normal at first because it's how your body has always been, but then it takes an astute healthcare professional to see it. I'm a medical student and I hadn't thought of EDS/HSD as a cause of my symptoms (I had only seen the super severe hyperextensibility and mobility photos). I'm so grateful to that chiropractor who ended up figuring out what was going on with me the whole time.
I wasn't diagnosed until I finally saw a rheumatologist
Yay, thanks for doing this vid! I had not seen his vid yet. I'm disappointed by his vid, at least the clips you reacted to.... I wish he had done more research....just like 10 more minutes of research rly. It doesn't take that much I dont think to see the things that he misses that you brought up - such as more female patients and comorbidities. I disagree with talking to my Dr about it bcuz they don't ever know what I'm saying. One Dr I tried telling about the Beighton scale and he didn't care at all. Another Dr told me if I had REALLY dislocated my hip, he would have to put it back in for me bcuz I couldn't do it myself.... Which brings me to my critique of how he suggested the imaginary male patient would come to him bcuz of bruising..... unlikely. I think pain or gastroparesis issues would be the reason for the medical visit. I also wish he would have touched briefly on a few of the subtypes especially vEDS. And subluxations/dislocations should have been brought up.
at 24 I had surgery to try to keep my right shoulder in place, at 33 9 Ortho's have looked at it and are recommending not only surgery but bone grafts or replacement!
i have an appt in january to get checked for eds and im pretty nervous cause when i called to make an appointment they said the doctor only takes on patients if theyre treatable which makes me think he wont diagnose me so he wont look bad the only reason i got an appointment is cause my insurance and main doctor got on his case and forced him to see me its not looking good for me
At 17, I was told fibromyalgia, 30s EDS, 41 stripped back to Fibromyalgia by a new GP when I went in repeatedly for life stopping neck pain. 1 year wait list for neurologist, and told to take antidepressants. I give up.
They can't just take away your diagnosis. If you're less hypermobile now it isn't because you don't have EDS but because as we grow we stiffen up. The point is that if you were ever hypermobile, you still have EDS.
dr mike is one of my favorite content creators! :D
Soo, what if you coincidentally have elastic skin, muscle pain, joint pain, bruise easily, and have hyper mobility- but you don't have EDS?
While I'm glad Dr Mike talked ABOUT EDS I'm deeply disappointed in his recent covid controversy
me too. I didn't know about it until a few others commented on here
@S M Dr Mike was photographed unmasked on a boat party in Miami. Like with a ton of people. He confirmed it with him and made an "apology" but his apology sucks. he's just a massive hypocrite who has spent months saying you shouldn't do this sort of thing.
@S M theres videos you can watch on it on channels like Spill i think
Hi Izzy! Love your videos! Have you ever thought of making a video about the RCCX theory? 😊
I've got HSD and was late diagnosed at age 30, now 32 and I've been suffering from chronic pain and many other things since childhood and was repeatedly told it's all because bad posture, weight, imbalances, bloods looked normal. IT got to the extent where my docs just dismissed me saying it's in my head. and nothing is actually wrong with me.
Just saw EDS on the show Transplant!
Dysautonomia - a big word I just learned. I can say that getting older, and gaining weight and higher blood pressure really helped me. Not the best plan though, for most people.
His one mentor diagnosed me and works directly with Maitland and TEDS at their hypermobility genetic clinic at NYIT.
Multiple people in my family have EDS, but I keep putting off getting diagnosed, I have the hyper mobile joints, tore a ligament in my ankle 5 years ago and still have swelling, foot doctor touched my feet and immediately noticed I have hyper mobile joints. I’m mostly putting it off cuz my mom had to fight to get diagnosed with EDS and it was exhausting watching her go through all the doctor visits and waiting to see a geneticist. Also, every time I move you can hear cracks or pops throughout my body, but I can never feel them, does anyone else have that same issue?
Can you see the doctor who diagnosed her?
People that work in circuses as contorsionists have EDS?
not everyone, but i’m sure some do. you can be hypermobile without having EDS. also people can train for flexibility which contortionists do.
It's possible that some have EDS :)
@@underscoreannie Thankyou Annie.
@@IzzyKDNA Thankyou Izzy. Now i know that there are more people with disabilities and illnesses than i thought. Great that they are accepted to work there!
@@ellie_grace_gymnast9069 Ok, first woman i know that works in the circus. I will find out about her.
Both me and my daughter have eds, pots and mcas, exactly the same, wish i could of past on something better to her then this horrible diesease, but i didnt find out what it was till i was 42, shes 21, but i notice how she had alot same issues growing up that i seen in myself, i went to doctors over and over, more than 20 times for pain and stomach issues, never found anything, was so frustrating, it wasnt until they diagnosed my daughter that they finally was able to figure out and diagnosed it for me.
Omg you reacted like as soon as he posted it 😂 I love it!!!
Many of us don't get diagnosed until our 40s, so a middle aged person is appropriate. Until recently, most doctors hadn't even heard of it.
I was 40 and still doubted and questioned by other providers I see for my disease!!!
Yep. I was 41 when I was diagnosed in 2017. And I had plenty of doctors who still hadn't heard of it.
@@angiect3791 I fell 8 years ago and needed knee surgery. It was the surgeon post op who asked if I had every been diagnosed with hEDS. I told him I had never heard of it before. He was convinced that I had it. Then I did my circus trick and he said, "Look it up, talk to your Doctor. She can call me. I have no doubt." When I did, every year of my life that I could remember was in print and on the web!!
My podiatrist, off all people, was the first person to actually put it in my record. Just by my pictures of hEDS effects on feet.
*What battles we have to go through!*
I knew I didn't have fibromyalgia.
I heard of it about 10 years before I was diagnosed, but I had been looking for answers since I was 11.
@@angiect3791 you and me both! Why was I always in pain? Oh it's puberty. Then it your period. Then, it was because of stress. Why am I dislocating my shoulders and having to go have them reset? Oh, you're not strong enough.
It wasn't until that knee surgeon when I was 36 that I finally had a place to look and spring forward. He may have hit on me, but I don't care. He apologized when he realized how we knew each other. *That man, in a way, saved my life.*
I don't have EDS and I could never fathom what your going through. But when you mentioned about the inconclusive blood results and the anxiety. I'm being treated for MCAS and my doc is like are you experiencing any stressors nope! I could care less about the fact that my throat randomly closes and it's getting worse. Or that I can't eat because it either makes me extremely sick or as soon as something touches my tongue it swells and so does my throat causing me to choke. But no I'm fine and dandy just another day of defending "my life" to a doctor. Because that's what it is. It wrecked my lungs, and my stomach dont get me started. Sorry about the rant I just wanted to say sorry about what you're going through and that I understand to a degree.
The gentleman that can pull his skin to extremes is called Gary Turner. He is a sideshow performer and holds the current Guinness World Record for the stretchiest skin, caused by classical EDS.
my doctor just told me yesterday that they know I have EDS but they won't diognose me so I can get life insurence when I turn 18 :/
I'm sorry, it can feel weird to be told you have something but that they don't want to make it official, as it can make you feel a bit like you're in limbo.
Omg I’m going through the same thing my doctor was like yeah it’s EDS but they won’t diagnose me but still consider me an EDS patient!!
Your doctors are being being kind life insurance increases your premiums for medical conditions you have even something common like anxiety and depression
Insurance shouldn't be as important as getting a accurate diagnosis on record immediately. In fact that could be considered insurance fraud. but more to the point, this shows how fracked up the current private insurance company system is from medical to life insurance to anything else. Where profits are more important then lives.
@@loganskiwyse7823 Yeah but that's not the doctor's fault, it seems like they're fudging things in the patient's favor. Lot's of doctor's aren't exactly thrilled about how things are run either but that's reality. At least some of them try to work the system in favor of their patient.
I've had doctors be like, well you could do this... *looks both ways sneakily* or if you do this, this, and this over here it's 10X cheaper and exactly the same.
I've known I have double jointed thumbs, but my main concern is my knees giving out sometimes, my blood pressure suddenly dropping sometimes and my shoulder continuing to hurt after months after I tripped and fell...
I actually want to go to the doctor, but can't unfortunately...
I have classic with traits of vascular :) my whole family has it, and was diagnosed when I was born. Yes my skin is ultra stretchy 😂
I'm actually going to my doctor about chronic pain (fybromyalgia, EDS, or possibly something else) and I've been running through the criteria for both fibromyalgia and EDS and I seem to fit both.. (EDS: Stretchy skin, chronic pain & fatigue, hybermobility, stomach issues GALORE) (fibromyalgia: sleep issues, chronic pain, chronic fatigue, stress, etc.)
While your video is informative, for which I'm grateful, did he really include the scary (for me) scenes in his videos?
Your story is EXACTLY the same as my start. I was 8/9 when my knees started hurting so bad i had to stop playing soccer. And my first full dislocation was my left knee 😂
does anyone also have a high narror palate? im 25 and i feel like its too late to fix it but ive always just hated my smile
Loved this!
If you do not have a genetic doctor in your area, what other doctor can you see to be diagnosed? I have possible POTS. I am diagnosed with idiopathic intracranial hypertension and a cranial leak. I am seeing a pattern of HEDS and these conditions... I have many symptoms!
I am currently 16 and between July 31, 2018 and August 31, 2020 I had a total of 4 knee surgeries, an orthoscopic lateral release (I'm pretty sure that's what it's called) on both of my knees and an MPFL Reconstruction with a Tibial Tubercle Osteotomy on both knees. Currently I am discussing with my surgeon (who I love so much, he is amazing) about what to do about my constant rolling/dislocating ankles, wrists, and fingers.
Every member of my family is either hypamobile of eds. My skin stretches but dosnt spring back. Hips are hypamobile flat feet. Daughter has eds and pots
A lot of drs do not like it when you are correct. They dont communicate well. In the end I was polite but need up in the ER for Pots. And I will also be tested in a few weeks for Ed's. If you live. With all the symptoms and they see you for 5 seconds, they should atleast listen. I was accurate in the end with sever pots. Now he wants me to exercise and build stamina. The fainting part doesn't phase him. What should I do? The meds are starting to help my HR and my BP
My eyes are greatly affected from Eds. Dx age 39. Can barely cope and work as a nurse anymore. its been hell
I don't know if I have eds but I can't really do anything about it because my parents don't believe me. I've had loads of cracks and pops throughout my body mostly in wrist, shoulder, knees, and back, one that mostly hurts is my back, am I ok?
You do a great job explaining! I just found out i have some cervical spine instability. I have dysautonomia and Lyme also. Going to have genetics test soon. Just curious do you know if the 23 and me looks for EDS genes?
I used to have very stretchy skin but now it os just fragile, but still very velvety soft.
3:30
i have hypermobile EDS and i have about the same amount of stretchiness to my skin as you haha!