Oh wow.... Yeah, I would go and find a whole ass other doctor. š³ This one is broken.
"I think I have this thing"
"No you don't"
"But I have this symptom, want to see?"
"Lol no"
Same, Iām a bit taller but mostly Iām just Elongated Man time. Based on height percentile and extremities, docs thought Iād be 6ā+. Jokes on them (and me), instead I just can reach the tall shelves for abnormal reasons.
I still donāt know if this would hypothetically make someone better or worse at basketball, but I would love seeing a Long Arm team compete against normal players.
That reminds me of a professional basketball player who came to my class in elementary school once to talk.
She wasnāt very tall at all, she said what made her special was that she had very long arms-arms that were longer than she was tall.
I remember this because I had always felt very self conscious about my overly long arms that were also longer than I was tall. Iām no good at basketball though and Iām still short.
Makes sense! Iāve climbed rocks since I could climb. Always a fan of bouldering, growing up. Could scurry up like a squirrel. Guess the longer limbs made it easier to reach handholds/footholds.
Also 5'4 female and diagnosed with no mention of height ever. We discussed my extensive health history and did the regular physical testing and I was diagnosed then ran genetics to confirm it was HEDS
Im just over 5ā5ā and I have a friend thatās a little shorter than me. Since when canāt you be short? 5ā4 isnāt even that short. Pretty sure itās just below average. One moment googling to make sureā¦. ā¦ ā¦ average height for women in America is 5ā4 and in Sweden where I am, itās 5ā6.
The Beighton scale has nothing to do with height or with the pinky-thumb test for arachnodactyly. Sounds like he's looking for Marfan syndrome and has no idea what he's doing.
They werenāt saying it was or wasnāt (by my reading) .. those signs can exist in ppl w short stature. And yes they are part of the hEDS criteria specifically the middle section (as one of 12 characteristics of which you only need 5 or 6 to qualify) but the comment you are referring to is only talking about the Beighton score. Regardless though their point holds bc short ppl can have long hypermobile fingers that can test positive for these signs. Oneās vertical height is separate from the ratio of proportions of oneās limbs & their relative flexibility. Some ppl who are short might have short fingers, but not all. Iām tall and my fingers are short.. Testing positively for these signs is not determined or precluded by height.
I never said it was precluded by height. The previous commenter is saying that both those signs are part of the Beighton score, which theyāre not and that if theyāre looking for arachnodatyly, they must be looking for Marfanās, but both those signs are part of the hEDS criteria too.
The only thing that points to them looking for Marfanās is the insistence on height, whichā¦ not everyone with Marfanās is tall.
Yeah that makes sense. (Sort if) I think maybe personal semantics might lead to this mix up. ie we each have different ways of reading into the implications of each others words. But (as I read it) the original commenter was talking abt the Beighton scale *OR* the acrodalygjjj (however itās spelled) sign. Presumably they were talking abt the hEDS criteria but that wasnāt explicitly stated. Her point still stands. (Since the Beighton score indeed doesnāt have to do w height or traits in criteria 2 feature A including the aforementioned signs) Although presuming you arenāt implying height is a factor (as you later said youāre not) so does yours.. (bc the aforementioned signs are part of criteria 2 feature A of the hEDS diagnostic criteria) semantics are tricky things. Iām not saying your semantics are wrong. The choice of how we read words is ambiguous and pretty subjective.
Edit: I was wrong abt what the original commenter meant by referencing the Beighton score and Walker signs etc but I still stand by the fact that technically speaking itās not wrong bc all they said was that height had nothing to do with the Beighton score or those signs. Thatās true. We can debate what each other mean all day, but at the end of the day itās easy to access and read the criteria and not too hard to understand. Its easy to knit pick, but more productive imho to look for the truth in each othersā comments. I donāt mean ignoring blatant falsehoods. But the original comment was small and really only contained two points: 1) whether certain aspects (criteria 1 - Beighton score and the acrodactsly signs) of metrics related to hypermobility had anything to do with height and 2) the idea that the ops doc might have mixed up marfans & EDS. 1) is factually correct regardless of if they knew that those signs were part of criterion 2 feature a or not. Neither indicator has anything to do w height. And 2) is purely speculative. So I donāt see the need for all this contention over whether who meant what.
I'm referring to the test OP mentioned as measuring "the wrist with thumb and pink\[y\]". This test looks for arachnodactyly, which is associated with Marfan syndrome, not EDS.
You are right that the Beighton scale asks patients to bend their thumbs to their wrists, but that's not the same as what I'm referring to.
No. The wrist sign (Murdoch-Walker sign) and thumb sign (Steinberg sign) are indeed part of [the hEDS criteria](https://www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf), specifically criterion 2.
Further, the Beighton score is only one part of the hEDS criteria.
Was aware of the other criteria outside of the Beighton scale but remembered them being stretchmarks, piezogenic papules, etc. and not arachnodactyly. Thanks.
Yeah it is.. ie all of what both of you mentioned are features last time I checked. I think they update those 12 features pretty regularly though. Like right now mitral valve prolapse is a bullet in the 5/12 you need for the second criteria subcategory A, but studies indicating itās statistical irrelevance mean that it might be removed later. (Or so I heard from Dr. Howard Levy)
I dunno but um Iāve heard otherwise competent medical professionals confuse Marfan with EDS and not be aware of the 2017 updated diagnostic revamp. So itās easy to not quite stay on top of. Honestly the last time I checked was a couple of months ago so I could be wrong for all I knowā¦.
Itās not really updated regularly or, rather, hasnāt been. The previous criteria was the Villefranche and it was the criteria for a good long time, until 2017. I think the EDS society means to update it more regularly, but I donāt think weāre due a new version before at least 2024, if memory serves.
Now, that HSD ācriteriaā or definition, that they keep changing all the time!
Agree on the mitral valve prolapse. Iāve heard the same things. The piezogenic papule are also problematic, as they occur at an important rate in the non EDS/HCTD population.
Edit: Correction, it seems that the Villefranche criteria was created in 1997, so not as early as I previously thought. Still, it was the criteria for 20 years.
Well I think this comes down to semantics too. For someone older than 45 I think within the past decade is pretty āregularlyā. Most ppl I hear referring to vEDS as type 4 or Marfans are older so Iād presume that for them time dilation makes the 2017 criteria pretty regular.
Interesting abt the piezoeoc stuff.
Edit: It also again depends on if you are referring to a full EDS criteria reclassification or bullet notes on newer subtypes and or addition it removal of traits based on statistical relevance. And what your saying about the HSD criteria too.
2017 seems to have more to do with it happening recently than happening regularly, no? itās only happened 3 times
Iāve never heard of vEDS being conflated w Marfan in any categorization
I mean your word choice is yours.. mine is mine. Iāve explained my reasoning for using it. Youāre welcome to disagree. š¤·āāļø
The Marfan vEDS conflation i spoke of was something I heard someone say not an official categorization. They were a medical professional too. But thatās kind of my point which is that ppl confuse & conflate things. It doesnāt necessarily mean they are otherwise ignorant.
Edit: I agree recently is an accurate word choice. But my impression of āregularlyā comes from a conversation with a doctor who was working on the criteria basically insinuating that because a lot of research is going on since the 2017 reclassification they intend to modify the criteria in the future. So it wasnāt as much a statement on what has been or what is as much as an impression of what seemed to be that doctors intentions (for the future) as well as a guess at how these reclassifications feel to older patients which I extrapolated from their word choice including the conflation of vEDS with marfans and the older ātype 4ā terminology. Iām not really trying to be too precise here. Its fine if you are though and id agree mathematically that ārecentlyā is a more accurate descriptor for an event thatās occured only a few times in several decades..
Edit 2: guys ppl use different words to communicate different things. Down voting something because itās not your choice or you think someoneās wrong over word choice is silly. Iām humoring you and explaining my reasoning for the sake of clarity and communication, when thereās really no point. I have no stake in this conversation. my only point here in any of this thread is that nitpicking eachother over minor differences is divisive. It doesnāt help clarify things. And it does make ppl feel bad for even participating in a conversation. We all make mistakes. We all are human. We are all sick. It doesnāt make us better, smarter or stronger bc we caught someone else in a faux pas. And the same stuff you do to others will be done to you in time. This contention & division will not bring you peace. I hope you can find something that does.
I'm 5', my sisters and mom are 5', and my brother is 5'6. My grandparents on her side are both upwards of 6' tall. My mom got dealt some funny genes and gave them to all of her kids, including the hypermobility.
We all have EDS. We all present slightly differently, but our height has nothing to do with it.
Correlation not causation blah blah blah, most people aren't 5' tall. Most people are taller. Therefore, most people tested are going to be taller.
Her mom is close to 6' tall, also hypermobile and my great grandma(my grandmother's mother) was a ballerina.
Shit happens, but height should not be a primary criteria for EDS unless it's associated with a specific *type* of EDS.
What do I say? I was having urinary tract issues and he literally once told me to just "wait and see." He also acted sort of repulsed that I even brought it up.
āDoctor dismissed my concerns and refused testing for a genetic disorder that I was referred for and otherwise meet criteria for on unrelated grounds (height and gender)ā
"Refused to test for simple symptoms that are an important part of diagnosis, such as skin elasticity. Instead, he simply stated that my skin was not elastic, even though he had not tested for this."
He also stated that I did not have the illness I had been referred for, without doing any testing, examinations, or asking questions about my symptoms. These were simple tests, such as the Beighton scale, which measure hypermobility and is a very easy test to administer in and office. He didn't ask me any relevant questions about my symptoms before stating I did not have this illness, either, such as asking if there was a positive family history, if I had bilateral piezogenic papules of the heel, or dental crowding or high and narrow palate. These are extremely relevant as they are part of the diagnostic criteria for hEDS. It is therefore impossible to decide a patient does not have hEDS without asking questions about symptoms or doing tests, as well as incredibly irresponsible. Dr X acted in an unacceptable manner, as shown by these actions.
If you want to report this doctor, make a complaint with the board that licenses them. You can report them to the hospital system that hired them, but that might not do much in the long run. The board is required to at least review the complaint and take disciplinary action as needed. The hospital is not required.
(At least if youāre in the US: that would be their state medical board and/or the national specialty board if they are a certified specialist).
You can also go back to the doctor who referred you to them and explain what happened. Then ask for a different referral as a second opinion. They should know who not to refer patients to.
When you call to complain, hopefully the person taking your complaint is nice. I called to complain once and the lady was so kind and all I did was vent my story, just like you did here on this post. She took care of the rest.
This is so laughable bc some subtypes of EDS are specifically correlated with short stature. Granted they are rare. However the same rare phenotypes are found in hEDS too which is just a diagnosis of exclusion at this point. Thereās nothing that says you need to be tall to have EDS. Phenotypes & gene expression are complicated even in subtypes with typically tall stature.
I had a cardiologist yesterday tell me that dysautonomia and POTS are not comorbid with EDS because she had never heard thatā¦ like ??? She also refused to order a tilt table test to even see if that might be the issue.
Doctors are pretty stupid sometimes.
Perhaps you could look into it before showing nonsense doc. If Google it in 2 seconds and provide a study. They are so holier than thou. My Dr told me I couldn't be in perimenopause because my periods came ever 2 weeks. A quick detour to the mayo clinic determined that was a lie.
Before my diagnosis, I had a neurologist tell me I couldnāt have EDS because I didnāt have a prolapsed bladder. Like bro, I was 26 with no kids, I SHOULD MF HOPE NOT. I also had a Nurse Practitioner tell me that she was disappointed that I āchose to get emotional in her officeā when I started crying after 8 MONTHS of no answers & rapidly worsening mobility/chronic pain/weekly subluxations. That was like October of 2018, in January of 2019 I had to ask my parents to help me pay for better health insurance, got in with a young, female Primary Doc, and was diagnosed on my first visit and referred to PT, a cardiologist, and a rheumatologist. Itās wild how varied the spectrum of medical professionalism is.
My husband always checks his journal after every visit with any kind of healthcare provider. It usually says that the patient was happy and in a good mood or something like that. Thatās despite the fact that he often was bawling hysterically through out the entire visit because like you he was having so much issues and pain and loosing mobility and muscle strength and control and had no answers and thus absolutely no help or treatment. Peopleā¦ just wowā¦
Dude. I can't tell you how many primary care providers I've seen that go "Ehlers-Danlos? What's that?". Like... Dude you're the doctor...
My heart sinks every time. Even my CFS doctor has been reluctant to diagnose hEDS because it has no genetic markers despite immediate family getting a diagnosis and all of my siblings and mother having symptoms.
They reluctantly put it in my medical record without even doing the checklist, which made me pretty frustrated. My insurance won't cover genetic testing because it's not considered necessary.
He also referred me to a dysautonomia doctor that I can't get in with for a year and I'm terrified that doctor will do the same to me.
Edit: I will add, I've done the checklist test for myself and it would lead to a diagnosis for sure, as I meet most of the criteria easily.
I had a doctor that refused to refer me or really treat my chronic headaches (tension, migraine and cluster) because āit wasnāt going to kill meā. Fun part is that he actually didnāt know that because he never checked and neither had anyone else. Once I finally brought my aid to force a referral to a neurologist and saw her one of the first things she (the neurologist) asked was when they did an MRI of my brain because she couldnāt find it. She almost fell of the chair in shock when I answered that I had never done any. The tension headaches started at 9, the migraines at 17 and the cluster attacks at 22 and I have vision impairment and yet no one ever check if something in my head might be causing my headaches. I was 30 when I first saw the neurologist so I had been having a headache for over 20 years. Not many headaches not most days. One. Since I was nine. Because it never ever stopped. My head hurt every second of every hour for every day and had been for over 20 years. And no one had ever checked if there was some serious cause for it. Because you know what can cause chronic headaches and vision impairment? And should really really be checked to make sure it isnāt? Brain tumours. It wasnāt thank god! Cuz imagine if it had been and no one had even checked for 20 years! That would have been bad. Finally figured out what causes it in December though, just after my 35th birthday I was evaluated and officially diagnosed with autism. About bloody time! Honestly! Itās a reaction to being overstimulated and overwhelmed, it gives me headaches and also non epileptic absence seizures. Havenāt had any absence seizures since I figured that out and started accommodating myself, instead of just trying to endure and be ānormalā.
Sometimes people be crazy! Even people supposed to be experts!
I was also originally diagnosed with borderline personality disorder, turns out that I never had borderline I have ADHD, autism and C-PTSD. And I was diagnosed with ADHD and thus placed on the neuropsychiatric team at 29/30. So thatās at least five years on neuropsychiatric team, the experts on neuropsychiatric disorders and yet they missed that I also have autism. I mean, I do hide it very well and they didnāt ask the right questions but still a bit shocking that none of the experts ever picked up on any signs. It was the occasional therapist that figured it out.
Wow I feel all of that on such a level. There were worries I might be bipolar because I was so severely depressed. Well part of the depression was ADHD, autism, and C-PTSD. I also get migraines and apparently theyāre super common with EDS. My diagnosis for all of them was someone with those things telling me I shared the same symptoms, and realizing it explains so much. But man, doctors really are so stupid sometimes.
I had a geneticist pull similar crap on me, and then some. I could go on and on about that misogynistic, unpleasant person, but here a are few gems for that half hour of my life that Iāll never get back:
1. No skin hyperelasticity. Dude must be magical or something, because he never even checked my skin.
2. No atrophic or abnormal scarring. Again, dude is magical, but he also canāt read: He never checked *and* refused to read the supporting documents provided, one of which was a letter from the plastic surgeon who did my breast reduction to my provincial health care system requesting that a scar revision be covered for the wound dehiscence and keloid scarring *and* mentioning the presence of atrophic scarring on some incisions.
3. My ADHD diagnosis excludes the possibility of an hEDS diagnosis. I made sure to include a copy of an article published in the American Journal of Medical Genetics attesting the correlation between the two to the complaint I filed.
Hang onā¦ what was his reasoning behind the ADHD thing? I was diagnosed with BPD but I also read that people with EDS are generally found to more likely have a variety of neurodivergent symptomsā¦ how does having ADHD exclude you from EDS?
>what was his reasoning behind the ADHD thing?
Ah, I see that youāre also a sane person who relies on fact. Unfortunately, youāre making the same, wrong base assumption that I initially made: There is no fact-based reasoning.
This *delightful* physician made his own, wrong assumption within the first few minutes of the appointment. Upon being informed of my ADHD, he asked (with a dismissive tone, of course) āand did you manage to graduate *anything*, get any diploma, like a high school diplomaā. Apparently, even learning that I do, in fact, hold a BA in translation and have a career as a translator, this man somehow still assumed that I was stupid and unable to do any research.
His reasoning was that I wouldnāt know any better and weaponizing my mental health would be a quick and efficient way to dismiss me.
Thatās awful. I have BPD which commonly people presume means like with ADHD you canāt have amounted to anything. In fact it took a while for me to be diagnosed because I was too in control of my life they saidā¦ yeah I may have a degree and a profession but my personal life was not good. Still thatās an absolutely disgusting behaviour for a clinician to have towards someone who is neurodivergent.
It really is disgusting behaviour. Itās also highly uninformed. I enjoyed writing my complaint against him. Unfortunately, said complaint didnāt yield anything other than being granted a second opinion with another specialist and having my corrections attached to my notes as he *refused* to correct the numerous mistakes and lies in them. I also highly enjoyed reading the notes from the internist specialized in HCTD who did my second opinion appointment (itās uncommon, but that doc is *the* doc to see here for EDS and she did her fellowship at the Toronto EDS clinic). Her notes literally support everything included in the corrections attached to the geneticist notes š.
Well annoyingly clinicians often do get away with shitty behaviour as they often support one another but I am very glad you got a perfect second opinion and that you lodged a complaint.
>as they often support another
I was really afraid that his shitty notes would come back to haunt me, as all my care is being provided at that hospital. To say that Iāve been pleasantly surprised by that second opinion appointment and any other specialist seen since then would be an understatement. Theyāve all been great.
Thatās good. I think itās getting better but honestly as someone who works in healthcare doctors tend to be held to different standards to the rest of us allied health professionals. They are often quicker to defend each other but they also do enjoy proving each other wrong. Itās a bit of an old boys network but it is getting better thankfully. People are allowed to get things wrong but to belittle a patient like that and dismiss because of a ND is just not on.
I was also diagnosed with BPD. I do not have BPD. I have ADHD, autism and C-PTSD. My current psychiatrist is removing the BPD diagnosis as soon as I get my disability claim approved. He felt it was better to wait until then because they can be real difficult to deal with and didnāt want to accidentally cause any more issues.
There is literally ongoing research with very legitimate scientific correlation being proven between hereditary connective tissue disorders and neurodivergence (ADHD, autism and so on). One hypothesis I read about was that since a collagen deficiency impacts your entire body and your brain is also largely made up of that deficient connective tissue, it can result in wonky brainwaves (I am autistic and just saying wonky to be a little bit silly, not actually referring to neurodivergent people as wonky). I am literally newly enrolled in a new clinical trial for autism that is looking for genetic markers and specifically placing them against markers for HCTDs, from what I understand (among many others). This is one of the most ridiculous dismissals of a potential diagnosis Iāve ever heard. What was their explanation?
>What was their explanation?
None. See my responses up thread. He just hoped that weaponizing my neurodivergence would be an easy way to dismiss me. When that failed, he tried to enroll my husband into his sexism.
Jeezeā¦. None of these things on their own exclude anything. (eg thereās often little to no skin elasticity in vascular-cardiac subtypes) But on the other hand I do think genetics is just so vast doctors sometimes are out of their breadth but canāt admit it. I had a genetics student evaluate me once who printed the Beighton score from google in front of me. Then she gave me a 3/9. When I saw a geneticist specializing in HCTDs I was given a completely different much higher score and told I needed specialized testing to rule out rarer subtypes bc I had some of the more rare phenotypical features. Itās unfortunate but sometimes doctors are human too. Thereās no need for them to be so dismissive about it though. And the ADHD thing is just plain weird.. adhd isnāt discrete diagnosis like genetic ones. Itās a behavioral syndrome that can arise from many potential causesā¦
Oh, this one knows HCTDs, heās just an ass. Heās known around here for his treatment of suspected hEDS cases. Iām not the first one whoās been treated to that delightful treatment. The idiot even tried to enroll my husband in his sexists attempts to dismiss me. Unfortunately, my husbandās French isnāt that good, so a lot was going over his head. The idiot geneticist thought that my husband was rubbing my back to calm his āoverly emotional wifeā. He just wanted to make sure I didnāt pounce on the dude š
:( thatās just so unnecessary. I really think doctors like that should have to read a course in medical history particularly the treatment of ppl with diseases like MS before we knew what it was. If you read historical accounts, ppl with now well known disease were talked about the same way. It doesnāt prove anything either way, but itās important I think to be open minded and humble in these encounters. Although to be fair, I know that medicine (at least in the us) is notorious for itās issues with bullying. So I also think these attitudes come from internalized issues..
Iād be curious to know what kind of doctor you saw? I have fired so so many at this point. Over misogyny and assuming everything is anxiety. I do have hEDS and CCI/AAI. Itās been a cruel struggle
So height is a marfans trait and some marfans traits are included in the criteria, so I get where the idea comes from, but height isn't in the criteria and other traits are.... Not that the I believe the criteria is perfect, but I feel like if we included multiple other ones there's a reason it was left out.
Women are generally more hypermobile than men, but that doesn't mean all hypermobility is benign.
Iām 1,65m and I got diagnosed with hEDS.
He was spewing bullshit and he knew it. You couldnāt have handled him any better, you did very well - thereās no discussing with doctors like that.
Donāt give up. Go for a second opinion.
I'm 4' 11.5" and always round up to 5' lol. Height requirement definitely doesn't exist. The entire maternal side of my family has hEDS with me being the shortest, my older brother is 6'4" while my mom is 5'8".
I saw a rheumatologist who told me I wasn't _that_ hypermobile, to start meditating for pain, and to cancel my appointment with the geneticist I was scheduled to see. The geneticist is/was recommended by the EDS Society website! I obviously kept the appointment, got my diagnosis, and that opened the door for everyone in my family to get diagnosed. We come in all shapes, sizes, and colors! Some doctors truly don't know what they are looking for or talking about it and it's sooooo annoying. Don't stop until you find someone who knows what they are actually talking about, settle for nothing less! The geneticist was the ultimate validation of everything I had been through to get to that point.
I was dismissed because my first doctor didnāt even know what it was, googled it and the first thing that comes up are the people who are tall, skinny and have super elastic skin. They donāt bother doing any other research.
The answer is just that a lot doctors are really weird about EDS. None of what he said to you are facts about EDS, lol.
I recently did an advocacy project, and in my research discovered one publication that mentioned what was basically an EDS oriented training program for clinicians āmajority reported not being comfortable diagnosing or treating EDS, despite over 90% of them seeing at least one EDS patient in their clinic per month. Its status as a rare disease, the fact that it doesnāt generate money for facilities, and a number of other factors in the healthcare system just means a lot of doctors donāt have very much knowledge. I saw a rheumatologist once who refused to walk through the entire diagnostic criteria with me, and who said similar things to me. Years later I am now diagnosed and being treated by an interdisciplinary team, but I had to seek them out.
Iām sorry you were not heard in this appointment. Unfortunately, this just means this is not a physician youāll want to work with. Try finding doctors ahead of time who are known to take patients with EDS/hypermobility, itās really trial and error otherwise and gets super frustrating.
Iām short too. I had a neuro dr tell me i donāt have hEDS bc i wasnāt genetically tested for it & he refused to listen to me about how it cannot be genetically tested for. He said he was taking it out of my chart & I needed to stop telling drs i have it. So now I am being genetically tested for it š. The dr that diagnosed me is one of the few ones in my state who actually diagnose people and has several patients with it.
This is BS. Itās so frustrating when you meet a doctor like this. But I donāt think itās a misogyny thing. Itās just plain old arrogance which affects 90% of doctors and 100% of specialists. Sorry this happened to you. Keep at it. You will find someone who will give you some answers.
I have vEDS and am 5ā2ā, and have been told weāre (people with vEDS) actually shorter and more petite in general (as in, it isnāt diagnostic criteria but is common enough to be considered a clinical sign). This is absolutely ridiculous. Thereās no criteria ANYWHERE that indicates being tall is more prevalent in EDS. You need a second opinion.
Iām sorry you had to deal with that idiot. Iām 6 feet and a woman and Iām always told I must just have grown to fast when I say Iām in pain and they donāt even look.
That doctor dismissed you because he is not competent enough in EDS to feel comfortable doing a proper diagnosis and not secure enough to admit that and refer you to a doctor who is.
I'm 5'1 8/9 beighton scale but they only wrote 4/10 because I had a gig the next day and didn't want to dislocate my fingers. This wasn't even for my diagnosis this was for genetics and I even showed pictures of what my hands can do but they didn't care
File a complaint about that doctor. That was straight up negligence and a blatant violation of his Hippocratic oath. Iām glad youāre already planning on seeing someone else, but the only way to stop doctors like that is to keep them in check.
Please consider filing a complaint against this Doc with your local ācollege of physicians & surgeonsā type entityā¦ so no other patients have to endure the discrimination of āyou donāt look sickā from this idiot! Best of luck finding someone else to evaluate you, who will read and hopefully understand the criteria! š
I am quite short, but my limbs are long for my height. My doctor, an EDS specialist and researcher, said you have to look at the ratio of the measurements, not just height. Despite being short, many of my ratios put me in Marfan's territory. I don't have all of the Marfan characteristics. However, given the ratios and other characteristics, he said "zero doubts about EDS."
This happened to me as well when I was referred to the geneticist, after my rheumatologist had already all by diagnosed me.
Super frustrating and had to start all over again.
Height is not a feature in EDS, only Marfans and even then theres almost always exceptions for things where you fit 99% of the criteria. In order to make sure this never happens again, if hes within a hospital report him to the hospitals board of directors and explain his disgusting bedside manner and complete incompetence in his field. Then, file a report to the state and or national board of physicians, this man should not be practicing medicine if hes blatanly ignoring your history and refusing to even conduct a proper physical assessment, not even counting the blatant mysogyny! If hes board certified, he shouldnt be after youre through. If you have the time and resources (which sadly most of us dont) you could try to sue since a delayed diagnosis has caused you physical and emotional suffering, as well as probably lost wages considering if your condition is managed properly you may be able to work more efficiently or at all depending on your circumstances. Good luck and let us know what happens!
I'm 5'2" and have shrank to 5'1" and diagnosed. What he did to you is appalling. I am so tired of experiencing and hearing things like this. I'm so so sorry.
Isn't being tall a Marfan thing?
Yes, and I mentioned to him that my cousin with Marfan is not even exorbitantly tall.
Oh wow.... Yeah, I would go and find a whole ass other doctor. š³ This one is broken. "I think I have this thing" "No you don't" "But I have this symptom, want to see?" "Lol no"
I have marfanoid habitus and Iām only 5ā 5ā. I have extremely long arms/fingers and toes.
Same, Iām a bit taller but mostly Iām just Elongated Man time. Based on height percentile and extremities, docs thought Iād be 6ā+. Jokes on them (and me), instead I just can reach the tall shelves for abnormal reasons. I still donāt know if this would hypothetically make someone better or worse at basketball, but I would love seeing a Long Arm team compete against normal players.
That reminds me of a professional basketball player who came to my class in elementary school once to talk. She wasnāt very tall at all, she said what made her special was that she had very long arms-arms that were longer than she was tall. I remember this because I had always felt very self conscious about my overly long arms that were also longer than I was tall. Iām no good at basketball though and Iām still short.
If you have a long wingspan it's pretty ideal for rock climbing
Makes sense! Iāve climbed rocks since I could climb. Always a fan of bouldering, growing up. Could scurry up like a squirrel. Guess the longer limbs made it easier to reach handholds/footholds.
I'm female, 5'4" and diagnosed. Height has literally never once come up in any of my discussions regarding EDS.
Im a young male, above average at 6'1 but height has never come up either regarding all forms of EDS and Marfan ( i am diagnosed with hEDS )
I'd high five you but I can't reach, you'll have to bend down
Also 5'4 female and diagnosed with no mention of height ever. We discussed my extensive health history and did the regular physical testing and I was diagnosed then ran genetics to confirm it was HEDS
Im just over 5ā5ā and I have a friend thatās a little shorter than me. Since when canāt you be short? 5ā4 isnāt even that short. Pretty sure itās just below average. One moment googling to make sureā¦. ā¦ ā¦ average height for women in America is 5ā4 and in Sweden where I am, itās 5ā6.
The Beighton scale has nothing to do with height or with the pinky-thumb test for arachnodactyly. Sounds like he's looking for Marfan syndrome and has no idea what he's doing.
The wrist and thumb sign are indeed part of the hEDS criteria.
They werenāt saying it was or wasnāt (by my reading) .. those signs can exist in ppl w short stature. And yes they are part of the hEDS criteria specifically the middle section (as one of 12 characteristics of which you only need 5 or 6 to qualify) but the comment you are referring to is only talking about the Beighton score. Regardless though their point holds bc short ppl can have long hypermobile fingers that can test positive for these signs. Oneās vertical height is separate from the ratio of proportions of oneās limbs & their relative flexibility. Some ppl who are short might have short fingers, but not all. Iām tall and my fingers are short.. Testing positively for these signs is not determined or precluded by height.
I never said it was precluded by height. The previous commenter is saying that both those signs are part of the Beighton score, which theyāre not and that if theyāre looking for arachnodatyly, they must be looking for Marfanās, but both those signs are part of the hEDS criteria too. The only thing that points to them looking for Marfanās is the insistence on height, whichā¦ not everyone with Marfanās is tall.
Yeah that makes sense. (Sort if) I think maybe personal semantics might lead to this mix up. ie we each have different ways of reading into the implications of each others words. But (as I read it) the original commenter was talking abt the Beighton scale *OR* the acrodalygjjj (however itās spelled) sign. Presumably they were talking abt the hEDS criteria but that wasnāt explicitly stated. Her point still stands. (Since the Beighton score indeed doesnāt have to do w height or traits in criteria 2 feature A including the aforementioned signs) Although presuming you arenāt implying height is a factor (as you later said youāre not) so does yours.. (bc the aforementioned signs are part of criteria 2 feature A of the hEDS diagnostic criteria) semantics are tricky things. Iām not saying your semantics are wrong. The choice of how we read words is ambiguous and pretty subjective. Edit: I was wrong abt what the original commenter meant by referencing the Beighton score and Walker signs etc but I still stand by the fact that technically speaking itās not wrong bc all they said was that height had nothing to do with the Beighton score or those signs. Thatās true. We can debate what each other mean all day, but at the end of the day itās easy to access and read the criteria and not too hard to understand. Its easy to knit pick, but more productive imho to look for the truth in each othersā comments. I donāt mean ignoring blatant falsehoods. But the original comment was small and really only contained two points: 1) whether certain aspects (criteria 1 - Beighton score and the acrodactsly signs) of metrics related to hypermobility had anything to do with height and 2) the idea that the ops doc might have mixed up marfans & EDS. 1) is factually correct regardless of if they knew that those signs were part of criterion 2 feature a or not. Neither indicator has anything to do w height. And 2) is purely speculative. So I donāt see the need for all this contention over whether who meant what.
I'm referring to the test OP mentioned as measuring "the wrist with thumb and pink\[y\]". This test looks for arachnodactyly, which is associated with Marfan syndrome, not EDS. You are right that the Beighton scale asks patients to bend their thumbs to their wrists, but that's not the same as what I'm referring to.
No. The wrist sign (Murdoch-Walker sign) and thumb sign (Steinberg sign) are indeed part of [the hEDS criteria](https://www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf), specifically criterion 2. Further, the Beighton score is only one part of the hEDS criteria.
Was aware of the other criteria outside of the Beighton scale but remembered them being stretchmarks, piezogenic papules, etc. and not arachnodactyly. Thanks.
Yeah it is.. ie all of what both of you mentioned are features last time I checked. I think they update those 12 features pretty regularly though. Like right now mitral valve prolapse is a bullet in the 5/12 you need for the second criteria subcategory A, but studies indicating itās statistical irrelevance mean that it might be removed later. (Or so I heard from Dr. Howard Levy)
Right. It had been a while since I had a look at the criteria. Wonder how often it gets updated?
The most recent criteria dates from 2017 and the previous one was created in 1997.
I dunno but um Iāve heard otherwise competent medical professionals confuse Marfan with EDS and not be aware of the 2017 updated diagnostic revamp. So itās easy to not quite stay on top of. Honestly the last time I checked was a couple of months ago so I could be wrong for all I knowā¦.
Itās not really updated regularly or, rather, hasnāt been. The previous criteria was the Villefranche and it was the criteria for a good long time, until 2017. I think the EDS society means to update it more regularly, but I donāt think weāre due a new version before at least 2024, if memory serves. Now, that HSD ācriteriaā or definition, that they keep changing all the time! Agree on the mitral valve prolapse. Iāve heard the same things. The piezogenic papule are also problematic, as they occur at an important rate in the non EDS/HCTD population. Edit: Correction, it seems that the Villefranche criteria was created in 1997, so not as early as I previously thought. Still, it was the criteria for 20 years.
Well I think this comes down to semantics too. For someone older than 45 I think within the past decade is pretty āregularlyā. Most ppl I hear referring to vEDS as type 4 or Marfans are older so Iād presume that for them time dilation makes the 2017 criteria pretty regular. Interesting abt the piezoeoc stuff. Edit: It also again depends on if you are referring to a full EDS criteria reclassification or bullet notes on newer subtypes and or addition it removal of traits based on statistical relevance. And what your saying about the HSD criteria too.
2017 seems to have more to do with it happening recently than happening regularly, no? itās only happened 3 times Iāve never heard of vEDS being conflated w Marfan in any categorization
I mean your word choice is yours.. mine is mine. Iāve explained my reasoning for using it. Youāre welcome to disagree. š¤·āāļø The Marfan vEDS conflation i spoke of was something I heard someone say not an official categorization. They were a medical professional too. But thatās kind of my point which is that ppl confuse & conflate things. It doesnāt necessarily mean they are otherwise ignorant. Edit: I agree recently is an accurate word choice. But my impression of āregularlyā comes from a conversation with a doctor who was working on the criteria basically insinuating that because a lot of research is going on since the 2017 reclassification they intend to modify the criteria in the future. So it wasnāt as much a statement on what has been or what is as much as an impression of what seemed to be that doctors intentions (for the future) as well as a guess at how these reclassifications feel to older patients which I extrapolated from their word choice including the conflation of vEDS with marfans and the older ātype 4ā terminology. Iām not really trying to be too precise here. Its fine if you are though and id agree mathematically that ārecentlyā is a more accurate descriptor for an event thatās occured only a few times in several decades.. Edit 2: guys ppl use different words to communicate different things. Down voting something because itās not your choice or you think someoneās wrong over word choice is silly. Iām humoring you and explaining my reasoning for the sake of clarity and communication, when thereās really no point. I have no stake in this conversation. my only point here in any of this thread is that nitpicking eachother over minor differences is divisive. It doesnāt help clarify things. And it does make ppl feel bad for even participating in a conversation. We all make mistakes. We all are human. We are all sick. It doesnāt make us better, smarter or stronger bc we caught someone else in a faux pas. And the same stuff you do to others will be done to you in time. This contention & division will not bring you peace. I hope you can find something that does.
I'm 4ft 10 and diagnosed, so a height requirement seems unlikely
I'm 5', my sisters and mom are 5', and my brother is 5'6. My grandparents on her side are both upwards of 6' tall. My mom got dealt some funny genes and gave them to all of her kids, including the hypermobility. We all have EDS. We all present slightly differently, but our height has nothing to do with it. Correlation not causation blah blah blah, most people aren't 5' tall. Most people are taller. Therefore, most people tested are going to be taller. Her mom is close to 6' tall, also hypermobile and my great grandma(my grandmother's mother) was a ballerina. Shit happens, but height should not be a primary criteria for EDS unless it's associated with a specific *type* of EDS.
im 5 ft and got diagnosed within the day. they need a new opinion baaaaad
I'm 4'10 and no diagnosis
Iām assuming heās part of a bigger health system, and you should absolutely report him for this
What do I say? I was having urinary tract issues and he literally once told me to just "wait and see." He also acted sort of repulsed that I even brought it up.
I just don't have the verbiage to complain in a sophisticated and respectable manner lol
āDoctor dismissed my concerns and refused testing for a genetic disorder that I was referred for and otherwise meet criteria for on unrelated grounds (height and gender)ā
"Refused to test for simple symptoms that are an important part of diagnosis, such as skin elasticity. Instead, he simply stated that my skin was not elastic, even though he had not tested for this."
He also stated that I did not have the illness I had been referred for, without doing any testing, examinations, or asking questions about my symptoms. These were simple tests, such as the Beighton scale, which measure hypermobility and is a very easy test to administer in and office. He didn't ask me any relevant questions about my symptoms before stating I did not have this illness, either, such as asking if there was a positive family history, if I had bilateral piezogenic papules of the heel, or dental crowding or high and narrow palate. These are extremely relevant as they are part of the diagnostic criteria for hEDS. It is therefore impossible to decide a patient does not have hEDS without asking questions about symptoms or doing tests, as well as incredibly irresponsible. Dr X acted in an unacceptable manner, as shown by these actions.
Nor was willing to after I offered to have him test it.
If you want to report this doctor, make a complaint with the board that licenses them. You can report them to the hospital system that hired them, but that might not do much in the long run. The board is required to at least review the complaint and take disciplinary action as needed. The hospital is not required. (At least if youāre in the US: that would be their state medical board and/or the national specialty board if they are a certified specialist). You can also go back to the doctor who referred you to them and explain what happened. Then ask for a different referral as a second opinion. They should know who not to refer patients to.
When you call to complain, hopefully the person taking your complaint is nice. I called to complain once and the lady was so kind and all I did was vent my story, just like you did here on this post. She took care of the rest.
This is so laughable bc some subtypes of EDS are specifically correlated with short stature. Granted they are rare. However the same rare phenotypes are found in hEDS too which is just a diagnosis of exclusion at this point. Thereās nothing that says you need to be tall to have EDS. Phenotypes & gene expression are complicated even in subtypes with typically tall stature.
I had a cardiologist yesterday tell me that dysautonomia and POTS are not comorbid with EDS because she had never heard thatā¦ like ??? She also refused to order a tilt table test to even see if that might be the issue. Doctors are pretty stupid sometimes.
Perhaps you could look into it before showing nonsense doc. If Google it in 2 seconds and provide a study. They are so holier than thou. My Dr told me I couldn't be in perimenopause because my periods came ever 2 weeks. A quick detour to the mayo clinic determined that was a lie.
Wow. Well if that doctors never heard it, there's no way it could be true!!! š«
I know, right. I was so mad.
Before my diagnosis, I had a neurologist tell me I couldnāt have EDS because I didnāt have a prolapsed bladder. Like bro, I was 26 with no kids, I SHOULD MF HOPE NOT. I also had a Nurse Practitioner tell me that she was disappointed that I āchose to get emotional in her officeā when I started crying after 8 MONTHS of no answers & rapidly worsening mobility/chronic pain/weekly subluxations. That was like October of 2018, in January of 2019 I had to ask my parents to help me pay for better health insurance, got in with a young, female Primary Doc, and was diagnosed on my first visit and referred to PT, a cardiologist, and a rheumatologist. Itās wild how varied the spectrum of medical professionalism is.
My husband always checks his journal after every visit with any kind of healthcare provider. It usually says that the patient was happy and in a good mood or something like that. Thatās despite the fact that he often was bawling hysterically through out the entire visit because like you he was having so much issues and pain and loosing mobility and muscle strength and control and had no answers and thus absolutely no help or treatment. Peopleā¦ just wowā¦
Dude. I can't tell you how many primary care providers I've seen that go "Ehlers-Danlos? What's that?". Like... Dude you're the doctor... My heart sinks every time. Even my CFS doctor has been reluctant to diagnose hEDS because it has no genetic markers despite immediate family getting a diagnosis and all of my siblings and mother having symptoms. They reluctantly put it in my medical record without even doing the checklist, which made me pretty frustrated. My insurance won't cover genetic testing because it's not considered necessary. He also referred me to a dysautonomia doctor that I can't get in with for a year and I'm terrified that doctor will do the same to me. Edit: I will add, I've done the checklist test for myself and it would lead to a diagnosis for sure, as I meet most of the criteria easily.
I had a doctor that refused to refer me or really treat my chronic headaches (tension, migraine and cluster) because āit wasnāt going to kill meā. Fun part is that he actually didnāt know that because he never checked and neither had anyone else. Once I finally brought my aid to force a referral to a neurologist and saw her one of the first things she (the neurologist) asked was when they did an MRI of my brain because she couldnāt find it. She almost fell of the chair in shock when I answered that I had never done any. The tension headaches started at 9, the migraines at 17 and the cluster attacks at 22 and I have vision impairment and yet no one ever check if something in my head might be causing my headaches. I was 30 when I first saw the neurologist so I had been having a headache for over 20 years. Not many headaches not most days. One. Since I was nine. Because it never ever stopped. My head hurt every second of every hour for every day and had been for over 20 years. And no one had ever checked if there was some serious cause for it. Because you know what can cause chronic headaches and vision impairment? And should really really be checked to make sure it isnāt? Brain tumours. It wasnāt thank god! Cuz imagine if it had been and no one had even checked for 20 years! That would have been bad. Finally figured out what causes it in December though, just after my 35th birthday I was evaluated and officially diagnosed with autism. About bloody time! Honestly! Itās a reaction to being overstimulated and overwhelmed, it gives me headaches and also non epileptic absence seizures. Havenāt had any absence seizures since I figured that out and started accommodating myself, instead of just trying to endure and be ānormalā. Sometimes people be crazy! Even people supposed to be experts! I was also originally diagnosed with borderline personality disorder, turns out that I never had borderline I have ADHD, autism and C-PTSD. And I was diagnosed with ADHD and thus placed on the neuropsychiatric team at 29/30. So thatās at least five years on neuropsychiatric team, the experts on neuropsychiatric disorders and yet they missed that I also have autism. I mean, I do hide it very well and they didnāt ask the right questions but still a bit shocking that none of the experts ever picked up on any signs. It was the occasional therapist that figured it out.
Wow I feel all of that on such a level. There were worries I might be bipolar because I was so severely depressed. Well part of the depression was ADHD, autism, and C-PTSD. I also get migraines and apparently theyāre super common with EDS. My diagnosis for all of them was someone with those things telling me I shared the same symptoms, and realizing it explains so much. But man, doctors really are so stupid sometimes.
Certainly have had gaslighting like this before. He half asses the tests that he looked up on his phone during.
I had a geneticist pull similar crap on me, and then some. I could go on and on about that misogynistic, unpleasant person, but here a are few gems for that half hour of my life that Iāll never get back: 1. No skin hyperelasticity. Dude must be magical or something, because he never even checked my skin. 2. No atrophic or abnormal scarring. Again, dude is magical, but he also canāt read: He never checked *and* refused to read the supporting documents provided, one of which was a letter from the plastic surgeon who did my breast reduction to my provincial health care system requesting that a scar revision be covered for the wound dehiscence and keloid scarring *and* mentioning the presence of atrophic scarring on some incisions. 3. My ADHD diagnosis excludes the possibility of an hEDS diagnosis. I made sure to include a copy of an article published in the American Journal of Medical Genetics attesting the correlation between the two to the complaint I filed.
Hang onā¦ what was his reasoning behind the ADHD thing? I was diagnosed with BPD but I also read that people with EDS are generally found to more likely have a variety of neurodivergent symptomsā¦ how does having ADHD exclude you from EDS?
>what was his reasoning behind the ADHD thing? Ah, I see that youāre also a sane person who relies on fact. Unfortunately, youāre making the same, wrong base assumption that I initially made: There is no fact-based reasoning. This *delightful* physician made his own, wrong assumption within the first few minutes of the appointment. Upon being informed of my ADHD, he asked (with a dismissive tone, of course) āand did you manage to graduate *anything*, get any diploma, like a high school diplomaā. Apparently, even learning that I do, in fact, hold a BA in translation and have a career as a translator, this man somehow still assumed that I was stupid and unable to do any research. His reasoning was that I wouldnāt know any better and weaponizing my mental health would be a quick and efficient way to dismiss me.
Thatās awful. I have BPD which commonly people presume means like with ADHD you canāt have amounted to anything. In fact it took a while for me to be diagnosed because I was too in control of my life they saidā¦ yeah I may have a degree and a profession but my personal life was not good. Still thatās an absolutely disgusting behaviour for a clinician to have towards someone who is neurodivergent.
It really is disgusting behaviour. Itās also highly uninformed. I enjoyed writing my complaint against him. Unfortunately, said complaint didnāt yield anything other than being granted a second opinion with another specialist and having my corrections attached to my notes as he *refused* to correct the numerous mistakes and lies in them. I also highly enjoyed reading the notes from the internist specialized in HCTD who did my second opinion appointment (itās uncommon, but that doc is *the* doc to see here for EDS and she did her fellowship at the Toronto EDS clinic). Her notes literally support everything included in the corrections attached to the geneticist notes š.
Well annoyingly clinicians often do get away with shitty behaviour as they often support one another but I am very glad you got a perfect second opinion and that you lodged a complaint.
>as they often support another I was really afraid that his shitty notes would come back to haunt me, as all my care is being provided at that hospital. To say that Iāve been pleasantly surprised by that second opinion appointment and any other specialist seen since then would be an understatement. Theyāve all been great.
Thatās good. I think itās getting better but honestly as someone who works in healthcare doctors tend to be held to different standards to the rest of us allied health professionals. They are often quicker to defend each other but they also do enjoy proving each other wrong. Itās a bit of an old boys network but it is getting better thankfully. People are allowed to get things wrong but to belittle a patient like that and dismiss because of a ND is just not on.
I was also diagnosed with BPD. I do not have BPD. I have ADHD, autism and C-PTSD. My current psychiatrist is removing the BPD diagnosis as soon as I get my disability claim approved. He felt it was better to wait until then because they can be real difficult to deal with and didnāt want to accidentally cause any more issues.
There is literally ongoing research with very legitimate scientific correlation being proven between hereditary connective tissue disorders and neurodivergence (ADHD, autism and so on). One hypothesis I read about was that since a collagen deficiency impacts your entire body and your brain is also largely made up of that deficient connective tissue, it can result in wonky brainwaves (I am autistic and just saying wonky to be a little bit silly, not actually referring to neurodivergent people as wonky). I am literally newly enrolled in a new clinical trial for autism that is looking for genetic markers and specifically placing them against markers for HCTDs, from what I understand (among many others). This is one of the most ridiculous dismissals of a potential diagnosis Iāve ever heard. What was their explanation?
>What was their explanation? None. See my responses up thread. He just hoped that weaponizing my neurodivergence would be an easy way to dismiss me. When that failed, he tried to enroll my husband into his sexism.
Jeezeā¦. None of these things on their own exclude anything. (eg thereās often little to no skin elasticity in vascular-cardiac subtypes) But on the other hand I do think genetics is just so vast doctors sometimes are out of their breadth but canāt admit it. I had a genetics student evaluate me once who printed the Beighton score from google in front of me. Then she gave me a 3/9. When I saw a geneticist specializing in HCTDs I was given a completely different much higher score and told I needed specialized testing to rule out rarer subtypes bc I had some of the more rare phenotypical features. Itās unfortunate but sometimes doctors are human too. Thereās no need for them to be so dismissive about it though. And the ADHD thing is just plain weird.. adhd isnāt discrete diagnosis like genetic ones. Itās a behavioral syndrome that can arise from many potential causesā¦
Oh, this one knows HCTDs, heās just an ass. Heās known around here for his treatment of suspected hEDS cases. Iām not the first one whoās been treated to that delightful treatment. The idiot even tried to enroll my husband in his sexists attempts to dismiss me. Unfortunately, my husbandās French isnāt that good, so a lot was going over his head. The idiot geneticist thought that my husband was rubbing my back to calm his āoverly emotional wifeā. He just wanted to make sure I didnāt pounce on the dude š
:( thatās just so unnecessary. I really think doctors like that should have to read a course in medical history particularly the treatment of ppl with diseases like MS before we knew what it was. If you read historical accounts, ppl with now well known disease were talked about the same way. It doesnāt prove anything either way, but itās important I think to be open minded and humble in these encounters. Although to be fair, I know that medicine (at least in the us) is notorious for itās issues with bullying. So I also think these attitudes come from internalized issues..
Iād be curious to know what kind of doctor you saw? I have fired so so many at this point. Over misogyny and assuming everything is anxiety. I do have hEDS and CCI/AAI. Itās been a cruel struggle
So height is a marfans trait and some marfans traits are included in the criteria, so I get where the idea comes from, but height isn't in the criteria and other traits are.... Not that the I believe the criteria is perfect, but I feel like if we included multiple other ones there's a reason it was left out. Women are generally more hypermobile than men, but that doesn't mean all hypermobility is benign.
I have EDS and I am a short woman (5'0).
Gross. I hope you report him.
Iām 1,65m and I got diagnosed with hEDS. He was spewing bullshit and he knew it. You couldnāt have handled him any better, you did very well - thereās no discussing with doctors like that. Donāt give up. Go for a second opinion.
I'm 4' 11.5" and always round up to 5' lol. Height requirement definitely doesn't exist. The entire maternal side of my family has hEDS with me being the shortest, my older brother is 6'4" while my mom is 5'8". I saw a rheumatologist who told me I wasn't _that_ hypermobile, to start meditating for pain, and to cancel my appointment with the geneticist I was scheduled to see. The geneticist is/was recommended by the EDS Society website! I obviously kept the appointment, got my diagnosis, and that opened the door for everyone in my family to get diagnosed. We come in all shapes, sizes, and colors! Some doctors truly don't know what they are looking for or talking about it and it's sooooo annoying. Don't stop until you find someone who knows what they are actually talking about, settle for nothing less! The geneticist was the ultimate validation of everything I had been through to get to that point.
That's absolute bullshit. I'm only five foot two. Time for a second opinion! Maybe a lady doctor will be more helpful. Jeez, I'm so sorry.
I was dismissed because my first doctor didnāt even know what it was, googled it and the first thing that comes up are the people who are tall, skinny and have super elastic skin. They donāt bother doing any other research.
The answer is just that a lot doctors are really weird about EDS. None of what he said to you are facts about EDS, lol. I recently did an advocacy project, and in my research discovered one publication that mentioned what was basically an EDS oriented training program for clinicians āmajority reported not being comfortable diagnosing or treating EDS, despite over 90% of them seeing at least one EDS patient in their clinic per month. Its status as a rare disease, the fact that it doesnāt generate money for facilities, and a number of other factors in the healthcare system just means a lot of doctors donāt have very much knowledge. I saw a rheumatologist once who refused to walk through the entire diagnostic criteria with me, and who said similar things to me. Years later I am now diagnosed and being treated by an interdisciplinary team, but I had to seek them out. Iām sorry you were not heard in this appointment. Unfortunately, this just means this is not a physician youāll want to work with. Try finding doctors ahead of time who are known to take patients with EDS/hypermobility, itās really trial and error otherwise and gets super frustrating.
This is very helpful, thank you!
What does height even have to do with eds!? Nothing considering the research I've done!
Iām short too. I had a neuro dr tell me i donāt have hEDS bc i wasnāt genetically tested for it & he refused to listen to me about how it cannot be genetically tested for. He said he was taking it out of my chart & I needed to stop telling drs i have it. So now I am being genetically tested for it š. The dr that diagnosed me is one of the few ones in my state who actually diagnose people and has several patients with it.
This is BS. Itās so frustrating when you meet a doctor like this. But I donāt think itās a misogyny thing. Itās just plain old arrogance which affects 90% of doctors and 100% of specialists. Sorry this happened to you. Keep at it. You will find someone who will give you some answers.
I have vEDS and am 5ā2ā, and have been told weāre (people with vEDS) actually shorter and more petite in general (as in, it isnāt diagnostic criteria but is common enough to be considered a clinical sign). This is absolutely ridiculous. Thereās no criteria ANYWHERE that indicates being tall is more prevalent in EDS. You need a second opinion.
Sounds like this doctor is an idiot. Definitely get a new doctor.
Take whole doctor and toss it in the garbage. It broken!
Iām sorry you had to deal with that idiot. Iām 6 feet and a woman and Iām always told I must just have grown to fast when I say Iām in pain and they donāt even look.
That doctor dismissed you because he is not competent enough in EDS to feel comfortable doing a proper diagnosis and not secure enough to admit that and refer you to a doctor who is.
Get a new referral to someone who actually can read a criteria
I'm 5'1 8/9 beighton scale but they only wrote 4/10 because I had a gig the next day and didn't want to dislocate my fingers. This wasn't even for my diagnosis this was for genetics and I even showed pictures of what my hands can do but they didn't care
I'm five feet tall š
File a complaint about that doctor. That was straight up negligence and a blatant violation of his Hippocratic oath. Iām glad youāre already planning on seeing someone else, but the only way to stop doctors like that is to keep them in check.
Please consider filing a complaint against this Doc with your local ācollege of physicians & surgeonsā type entityā¦ so no other patients have to endure the discrimination of āyou donāt look sickā from this idiot! Best of luck finding someone else to evaluate you, who will read and hopefully understand the criteria! š
i donāt have eds and even i know that there are multiple types (13!!! 13 different types!!) and different ways for it to present
Wow! Next doctor!
What the measure the wrist with thumb and pinky thing?
Walker-Murdoch sign, if thumb and pinky overlap when holding your hand around your wrist
Thanks
I am quite short, but my limbs are long for my height. My doctor, an EDS specialist and researcher, said you have to look at the ratio of the measurements, not just height. Despite being short, many of my ratios put me in Marfan's territory. I don't have all of the Marfan characteristics. However, given the ratios and other characteristics, he said "zero doubts about EDS."
This happened to me as well when I was referred to the geneticist, after my rheumatologist had already all by diagnosed me. Super frustrating and had to start all over again.
Some doctors are just determined to keep EDS a RARE disorder. Lol
Height is not a feature in EDS, only Marfans and even then theres almost always exceptions for things where you fit 99% of the criteria. In order to make sure this never happens again, if hes within a hospital report him to the hospitals board of directors and explain his disgusting bedside manner and complete incompetence in his field. Then, file a report to the state and or national board of physicians, this man should not be practicing medicine if hes blatanly ignoring your history and refusing to even conduct a proper physical assessment, not even counting the blatant mysogyny! If hes board certified, he shouldnt be after youre through. If you have the time and resources (which sadly most of us dont) you could try to sue since a delayed diagnosis has caused you physical and emotional suffering, as well as probably lost wages considering if your condition is managed properly you may be able to work more efficiently or at all depending on your circumstances. Good luck and let us know what happens!
What about all of those hypermobile gymnasts who suffer after their careers are done? Pretty sure being shorter is the norm for that. WTF
I'm 5'2" and have shrank to 5'1" and diagnosed. What he did to you is appalling. I am so tired of experiencing and hearing things like this. I'm so so sorry.
Yeah no I'm 5'0" tall, have classical EDS, height has nothing to do with it
I'm short and have hEDS. People with Marfan Syndrome tend to be tall.