Ehlers-Danlos Syndrome - CRASH! Medical Review Series

[@cabosefromblutem3796]

It would be helpful to note that while skin hyperelasticity will be present, the photo shown is clinically misleading. The vast majority of patients with Ehler's Danlos will not have hyperelasticity to this extent and it will likely not benefit the diagnosis process to expect such drastic cases as this with every patient. (:

[@garretjackson2343]

Unfortunately, this info does not cover the gut disorders involved in EDS. With the gut symptoms, opiates meds are very harmful to slowing down the gastric emptying which tends to be a big issue.

[@jinlinwu1423]

It seems that there are many patients with EDS in western countries. However, many cardiovascular surgeons don't even realize its existence here in China. We often group those patients with aortic disease and connective tissue disorder into MS. We must have misdiagnosed a lot patients with EDS or LDS. A lot to learn! Thank you for your tutorial. excellent.

[@WhereTheBeaversLive]

Very informative video. My son and I both have EDS.

[@darrend2035]

CSF leaks are supposedly common in these people but further research is needed

[@michellec3100]

It does miss the extreme multiple manifestations like intestine, colon prolapse is still not even reported by radiologists!, also pics of striae are missing please, people can look like absolute zebras from top to toe, not just around hips....don't concentrate too much on elastic skin as it does not need to be the case at all to actually still be EDS.

[@seanbrendangarrette7644]

Michelle X I have a belief that you didn’t watch this video to the end or you didn’t read the presentations

[@victoriousballa236]

The best way to manage my ehlers danlos is through the endocannabinoid system. Eating cannabis flax oil helps systematically for me. Also a link between Asperger's and EDS can be made. I'm meeting more people just like me.

[@callahclan7456]

Victorious Balla I think my son and I share some traits of these. Is there any link with blood type?

[@aa-xi8bc]

Wait... you’re not supposed to see hundreds of veins on your chest?!

[@shannongreenwell1278]

I have EDS, mine is the Classic type. Mine is what would be called EDS type two , the type 1 collagen is responsible for the type of EDS that I have and also is responsible for Osteogenesis Imperfecta which the majority of my family has. I read it in a book that was written by expert on EDS. My eye doctor saw the blue sclera in my eyes. I am easy to bruise, I have stretchy skin on my hands, and under my eyes. It’s a little bit behind my ears. I use to be hyper mobile very well as a child but I am somewhat flexible now. I can turn my head around like a 🦉. I can do the “ birds in flight” symbol with my hands. I have the cigarette paper scar on my chest ( thanks to a bowl of Ramen noodles) . My Neurologist is the one who diagnosed me.

[@raccoonresidence9086]

Paul, what about trachea hyper mobility? Moving your trachea way past your left and right sides of your neck in addition to multi directional joints and shoulder blades leading to hooking ribs and subluxing ribs?

[@عبدالرحمنالشمري-ر4د]

Very helpful explanation

[@werdnighoffman6146]

thanks alot very nice presentation.

[@poltescoe]

This is such a great video, but sadly for me is taking forever to download.

[@sarahpia9050]

so helpful, great for learning - studying at the momet

[@Jkstolz]

Wow! My brothers have this..i had no idea this was a thing. Maybe why my babies didn't have a separating sac.. hmmm Interesting.

[@Star5dg]

Cutix laxa a condition on its own?

[@WildKatatHeart65]

I think I satisfy the criteria for 2 types. I've already been dx-ed with hypermobility, but I'm certain I have the vascular type as well. I've had 2 pregnancies - the first birth was relatively normal; the 2nd was complicated. 2 months premature. I have a hiatal hernia and recently had a life-threatening strangulated hernia of my intestines. I have the transparent mottled looking skin. So does my 1st son. Dx-ed with fibro at 30yo. This vid has me a bit rattled because life expectancy for vascular type is 50 yo, and I am 51! I am starting to have heart symptoms. I know my dad had this - never dx-ed. I am also thinking that both my children may have it. I know my 1st son does.

[@WildKatatHeart65]

My dad lived till 76yo, but he became debilitated in his 30-40's.

[@greeneyes12346]

Vascular type would cover your hypermobility type meaning your hyper mobile will be considered part of your vascular type instead of calling it both type 3 (hyper mobility type) and vascular. You can be called a mixed type which they may diagnose you with since you could have both type 3 and vascular it just depends on your doctors preference.

[@catherinelevison3310]

And since 2017 all of it is easier to get diagnosed. Try not to worry about the vascular and heart issues as we now have tons of people not having any of this until WAY after 70 and beyond. They used to teach that the heart issues would start at 40 including sudden death, and now, since the 2017 symposium, they are giving good news and extended the time between heart work-ups to a lot longer between them than they were just a few years ago.

[@l.p.schulman3054]

SYMPTOMS= SUBJECTIVE SIGNS= OBJECTIVE Incorrectly used in this video.

[@barbiekat9764]

Yes, I have the Hypermobility Type 3 issues but I have been diagnosed with Fibromyalgia and mixed connective tissue disease with lupus and RA issues, I have a lot of joint instability. I have recently learned I have the genetic disorder alpha 1 antitrypsin deficiency, (most severe ZZ). There seems to be a connection BUT doctors don't seems to be interested.

[@gailnightowl0423]

What kind of dr did u go to and what kind of test to diagnose the lupus, RA and connective tissue disease? I have so many of these things in the video.

[@barbiekat9764]

Miranda frost, I have seen different doctors over a 20 year period of time. Mixed Connective Tissue Disease (MCTD) is like a "variety pack" of autoimmune diseases. It is usually diagnosed when you have symptoms and/or lab tests that have some BUT not all of the issues that would lead to a diagnosis of any one (RA, Lupus...). Usually you see a rheumatologist for this BUT it is extremely difficult to find one who looks beyond their prescription pad! My own experience is that they are not fans of learning or in receiving new information...just drug driven. Some of the meds can cause worse problems than they help. Others have mentioned the "gut" and the truth is that when the lining is damaged and food and bacteria gets through to the bloodstream and then the tissues, joints, cells, the body goes on attack and your body is attacked by the "friendly fire"meant for the "invaders"...Yep, it is called "Leaky Gut" (intestinal permeability)...

[@kathydobbs9850]

With the new criteria you wouldn't be diagnosed with hEDS. The last section for criteria is that there be no autoimmune disorders like the ones you mentioned. YOu still need to look at yourself as being hypermobile ..that isn't uncommon for other autoimmune disorders or diseases.

[@kathydobbs9850]

I worked with the best gastroenterologists in Alberta as well as the best colorectal surgeons in Canada. They do not believe leaky gut symdrome exists. . knowledge of how anatomy and physiology applies discredits that theory. do you take probioitics to help the GI flora and with immune problems... they may be benificial.

[@jinlinwu1423]

you must be a basic science researcher, haha.

[@L.Santos11]

did not get the difference between marfan x danlos. it was confuse

[@eelivia]

L. Santos Did you watch his lecture on Marfan? It answers your question.

[@jinlinwu1423]

I am always confused by this diagnosis differentiation. Indeed, there are too many symptoms overlapping.