How to Get Diagnosed With EDS | 2017 EDS Criteria

How to Get Diagnosed With EDS | 2017 EDS Criteria

hey guys I’m Izzy and today I wanted to
go through the diagnostic criteria for hypermobile EDS so in March 2017 the new criteria came
out and it’s quite different than the older criteria, so it’s really important
that you actually follow the new criteria because it it’s possible that
if you use the old one, some people without EDS could potentially get
diagnosed and it’s just a lot more specific. So with that let’s begin! Now
there are three major criteria: one two and three, obviously, and you have to pass
all three, but within all those criteria they’re subsets. So criterion one
assesses your joint hypermobility and it asks you to do nine things and each one
is a point. First thing is touching your thumb to your wrist I’m actually not
going to touch it because it hurts me and I can only sometimes do it
so here’s a picture. So one point if you can do it here another point if you can
do it on this arm. Then if your pinky extends greater than ninety degrees like
this on each hand is a point for each one. Ninety degrees is a right angle, I’m
assuming you know that but I don’t know. um [laughs]. Next if your elbows hyper-extended greater than ten degrees, mine do not. They hyperextend only a little bit, but
I’ll put it in an image so you guys can see what I’m talking about.
But the hyperextending is like if you see how like this isn’t perfectly
straight, like if I wasn’t hyperextending it’d be here, but instead my arm goes
like that. But it’s still not very hyper extended. So a point for each arm. And
then when you’re standing pushing your legs backwards, do the hyper extend as
well? I don’t want to move so I’m gonna show you but here’s a picture. And a
point for each leg. And then lastly it’s can you straighten both your legs and
bend over to touch the ground with your palms flat and that’s one point. So if
you are a child who has not gone through puberty yet, you have to get six out of
nine points, meaning you have to have done six of those nine things. If you are
post-pubescent but you haven’t yet but you’re under the age of 50 then you have
to get five points. And then if you’re over 5,0 you have to get four points. BUT,
if you’re one point below that number that you actually have to pass,
you can still potentially pass criterion one if you say yes to two of these next
questions I’m gonna ask. First, could you ever bend down with your legs straight and
arm straight and touch the ground? the next question is, could you at any
point touch your thumb to your wrist? As a child did you amuse your friends by
contorting your body into strange shapes or could you do the splits? As a child or
a teenager did your shoulder or kneecap dislocate on more than one occasion? And do you consider yourself double-jointed? so if you answer yes to two or more of
those questions I just ask you and you were just one point below what you
needed to pass then you have passed criterion one. Now criterion two consists
of three features: A, B, and C, and you have to pass two out of three of those
features to pass criterion two. So feature A is a list of twelve things
and you have to pass five of them so let’s begin! Unusually soft or velvety
skin. If you touch right here on me, right here, and certain places like my
stomach, I am so unbelievably soft. People used to
pet my skin when I was growing up…it is really soft. Mild skin hyperextensibility. That just means that your skin a little bit stretchier or that normal. For
me like my skin stretches here a little bit extra and like on the other side and
my neck and a few other places potentially but it’s not very stretchy,
just a little bit stretchier than normal. unexplained stretch marks on your body,
meaning that it can’t be explained by something such as a growth spurt that
then caused you or increase in weight or decrease in weight Bilateral Piezogenic papules on your heels basically when I stand on the ground I
get these little papules on my heels and it tends to be kind of like an
indication of a potential connective tissue disorder in genera,l but don’t
worry a lot of people get those and they don’t have a connective tissue disorder.
So it’s fine. It’s just that it tends to be quite common in connective tissue
disorders. It’s just like balls of fat, I think, or something like that. Recurrent
or multiple abdominal hernias atrophic scarring in at least two different locations in your body basically that means kind of like
it heals with an indent, so like if you ever seen somebody with acne on their
face and they end up having an indent after it heals kind of like that but on
at least two different scars on your body. However, it needs to not have, it
needs to not be like crazy like risen like that makes sense or basically like,
I’m gonna put in two pictures right here. It can’t look like that. If it looks like
that you might be more of a candidate for classical ehlers-danlos syndrome as
opposed to the hyper mobile type so that’s why those two are not on this
criteria and are not like on this diagnostic criteria because if you have
those two you should definitely be genetically tested for the classical
type. Pelvic floor, rectal or uterine prolapse without a prior history of severe obesity or any other condition that would lead you to have more
prolapses. Dental crowding or a high and narrow plate so it means like your hard
palate and soft palate actually more like your hard palate, like the whole palate
is too close together, so you might have had gone to get like a a palate expander
when you were younger when you got braces something like that or there was
not enough room for all your teeth to come in and they had to pull some of the
ones in the back to put them in place. Arachnodactyly, I find this word really
funny because there reminds me of like a dinosaur or something. Basically what
that means is abnormally long fingers. That’s a characteristic of Marfan
syndrome that sometimes over crosses like overlaps with EDS and it’s called, I
think like a marfanoid habitus. oh no just kidding that’s when you’re really
tall and have long arms. Anyway oh yeah but for this criteria it actually, they’re saying
you can either have really long fingers or if you could do one of these next
things then you then you pass for Arachnodactyly if you can do something
called, I think it’s the Walker sign, oh no just kidding this is the Steinberg sign
where your thumb, [text message notification], if you put it across your arm okay someone’s texting me and
it’s making noises. Go away. If it can like continue on past your your hand
then that passes. And then for the, or you can… I can’t do this… wrap your ring
finger and your thumb finger and if it overlaps like this much then you pass for
Arachnodactyly, so you have to have one of those three things and you’ll pass
for it. Arm span to height ratio of greater than or equal to 1.05. So that would be the marfanoid habitus where basically people tend to
have really long arms and are really tall when you have Marfan syndrome and
sometimes that overlaps with EDS. mitral valve prolapse And then an aortic root dilation greater than positive two. So you needed to have said yes to at least
five of those if so, you passed feature A. If you didn’t,
stick around for B to see you see if you passed those because, like I said, you
only need two of the three sections to pass criterion two. Feature B is a family history of ehlers-danlos syndrome it’s specific, saying that a family member
needs to have passed the criteria on their own for ehlers-danlos syndrome. and
if so, check it off because that’s a yes. For feature C you have to have one of
these three: musculoskeletal pain for greater than three months i at least
two limbs, chronic widespread pain for greater than three months, or
recurrent joint dislocations in at least two or more joints without like a trauma
that would cause it to dislocate in somebody without EDS. So like if somebody came over and kicked your kneecap out of place, that wouldn’t really count because
that was something pushing it out. Or just frank joint instability. Lastly is criterion three and basically you have to answer “no” to every single one of
these and then you pass criteria three it’s basically just taking out other
things from the equation such as like autoimmune diseases that could be act
that could actually be explaining your symptoms so that way you don’t get
misdiagnosed with EDS. So the first is that you have to
have an absence of really unusually fragile skin and if you happen to have
that then you should be looking at the other forms of EDS because the
hypermobile type basically comes with the least fragile skin out of all of
them for most people. Two, the exclusion of any other heritable or acquired diseases that could be causing joint pain for example and many of your other
symptoms so that could include any other connective tissue disorder like mixed
connective tissue disorder, lupus, things that are like autoimmune or it could also
be heritable like Marfan syndrome. If you have Marfan syndrome you really unlikely have EDS like you know that’d be really rare to have both two different rare
disorders so because if you have Marfan syndrome you might pass the criteria for
EDS but you don’t have EDS you have Marfan syndrome and there are ways
through genetic testing to be able to tell the difference but they are pretty
distinct so usually you can tell the difference between EDS and many other
connective tissue disorders. And three, the exclusion of anything else that could explain why you have such unstable joints or really loose joints, such as
just general ligament laxity due to, say, like training for gymnastics for most of
your life and that caused you to be extra stretchy, but like you don’t have
EDS, I mean unlikely. Or, what is the other one or hypotonia, so that’s just it’s not just like weakness of the muscles. Hold on, let me look that up. yes correct
low muscle tone so like weak muscles, not very many muscles. Well you have the
same number, just they’re not as strong so yeah, because if somebody’s
really weak then they’re not gonna have the muscles around their joints to
support it and they’ll likely be more like flexible and more unstable in their
joints. so if you said yes to one two and three,
you might have EDS. I can’t say that you do cuz I’m not a doctor and also it’s
really important to have a doctor actually assess you using this criteria
because sometimes for example you might think that you Arachnodactyly, like
really long fingers but you actually don’t, you just think that you do, or
they’re not quite long enough and a doctor should be able to know whether or
not you have it or actually have the precise measurements that they have to
take saying like, let’s say they know your height, then they’ll say how big
your fingers are supposed to be and then measure all of them, and if they’re longer than they should be then you pass. Who knows you know, things like that.
And it would also be terrible to self diagnose yourself with something and not
actually get the diagnosis of it because what if that’s not what you have and you
know if you have a rheumatological condition like lupus for example that’s
causing you very similar symptoms you don’t want to assume it’s EDS instead of
just getting instead of actually going to a doctor getting the correct
diagnosis and then getting very specific treatments for your lupus that could
really help. So this is really just informative and kind of something that I
hope you can do on your own, think about it say, hmm this really seems
like something I could have, bring it to a doctor and let them know that you
think it’s a possibility. So yeah thanks so much for watching this video, please
comment down below if you have any questions and also subscribe to my
channel if you want to see more videos like this. I do a lot of videos on my EDS
and comorbidities that I have from my EDS and yeah I’ll see you guys on
another video bye

20 comments on “How to Get Diagnosed With EDS | 2017 EDS Criteria

  1. Helen P Post author

    Really informative, thank you. My 5 year old meets criteria 1 and 3 but not criteria 2. He does however have stretchy skin so wondered if you think EDS is still something we would need to consider? Thank you

  2. Michelle Nar Post author

    You are a freaking rockstar 🌟for this! I had searched for something like this before but must have missed it ,but luckily I recently started following you and am just now going through your old vids and found this gold right here !🤗🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓

  3. Stone Johnson Vlogs Post author

    So… I'm watching this video for probably like the 10th time, because I used to watch this video before I got diagnosed with EDS. Now, I have been diagnosed with EDS for about 4 months.

  4. Andrea Lane Post author

    Thanks for a very informative video, Izzy! Many of my grandkids have EDS symptoms, my sister has been diagnosed, as has her daughter (my niece), and I have many symptoms as well. I'm in the process of being diagnosed-waiting to see a specialist in Boston. I did not know about the new criteria, so thank you very much for bringing that info out for me to discover today!

  5. Ginger Snow White Post author

    I'm 30, I've always been hyper mobile, still am minus still being able to put my feet behind my head and splits. I show many symptoms. I plan on going to my doctor soon because my lower back/pelvis has been killing me lately, same with my left shoulder. Sometimes it's my right shoulder. Sometimes neck. Randomly one of my feet sometimes. Itd be good to know if this was the cause. All I know is I need to find the problem and do my best to fix it or keep it from getting worse. Thank you!

  6. Catherine Dunne Post author

    I actually got diagnosed with EDS last year and I kind a wish I found this video sooner because it would explain so much that weird things that were going on but it’s nice to see someone to tell people what this condition is because it’s hard to explain I find so thank you

  7. Andrea G Post author

    Just wondering, did you get the genetic testing to confirm? Do you know which gene affects/shows EDS?

  8. Pixieinhiding Post author

    My GP said that despite me being able to do the wrist thing with other features that my wrist should be going the other way therefore I don’t have EDS and am just flexible

  9. Hannah Myers Post author

    I passed all the criteria. My body always hurts I’ve been wanting to be tested for awhile I just don’t have insurance. 😭

  10. Jessica c Post author

    I'm positive I have heds and even possibly classical like Eds. I'm 25, passed the criterion 1 with flying colours and she said I was the most hypermobile 25 year old she'd seen. However she was not doing criterion 2 properly and she was iffy on 3 things and said no to my abdominal hiatus hernia which would have made me 6/5 instead of 2/5 with a possible 5/5… Family I'm not sure but criterion 3 I ticked all 3. The only reason I think it could be classical like is because my skin can be fragile in certain places and I have like 2 scars that looked like those images. I have pretty translucent skin as well as a few other things that overlap with like 3 other types of eds. I need to get a second opinion on the heds and once I get that I need to get genetically tested. Such a long process. Taken me 20 year's…

  11. Leigh Olivier Post author

    Someone help her articulate, please… I'd have finished watching this but her presentation is just so unprofessional and irritating. It sounds like a teenager talking about boys.

  12. Bev V Post author

    I was so excited when the new diagnostic criteria came out. What’s unfortunate, is that most physicians don’t have a clue. I finally got a dx of EDS hypermobile type from my rheumatologist. There is no genetic testing yet for the hypermobile type of EDS, but research is being done in that regard. An interesting aspect of hypermobility is its strong connection to anxiety.

  13. Shannon Michelle Clark Post author

    Oh this is spppppam———yes I can bend over- I’m 6 feet 1 in. Yes- double jointed- yes pinky’s fingers- all fingers curve waaaay up

  14. Rebecca Williams Post author

    I just got diagnosed with eds, I’m happy to finally have a diagnosis but I have been given no help at all. I have a referral to physio but I’ve been to physio countless times with no improvement. I thought that when I finally got a diagnosis I’d have help and support and I guess I was wrong.

  15. Bethany Hutton Post author

    I literally passed everything, I have been diagnosed from a doctor to have pots and gastroparesis, and macs…. I am highly suspicious that I have eds… also I’m superhypermobile not saying if that is why I have EDS but I also dislocate and sub lax in my shoulder and pointer fingers… eeek I feel like I should go get tested what do you think?

  16. ashley isn’t thicc Post author

    so i’m not really hypermobile, but i meet most of the other symptoms and my joints dislocate a lot. would that still constitute for an EDS diagnosis or maybe a different type? this one really seems to fit though other than the hypermobility. i can only do like 2 of the hypermobility things, however i also have some hypermobile joints that aren’t in the criteria (shoulders, DIP joints, etc). i went to multiple doctors for months and they could never find anything wrong, but EDS was never brought up. next time i go to my doctor i’m going to bring it up.


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