What is EDS? (Ehlers-Danlos Syndrome)
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- Опубліковано 21 січ 2016
- So I have Ehlers-Danlos Type III, the Hypermobility Type. Watch this video if you want to learn about what EDS is and how it affects me, as a contortionist.
Read more about EDS:
Basic Information: www.ednf.org/what-eds
The Different Types: www.ednf.org/eds-types
Hypermobility Type: www.ednf.org/node/11
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WHO WANTS TO TAKE A SHOT OUT OF MY NECK
Me
Wise Planet me
bby girl I laughed so hard😂
1111th!!
bby girl 💀💀
binge watching all these videos about different medical conditions and can't stop myself, but I'm learning so much.
Tampatec same
Tampatec WHY DO I SEE YOU ON SO MUCH VIDS AAAA
Tampatec same dude, same.
Tampatec OMG can't stop either
YO I SEE YOU IN INSIDE EDITION AND EVERYWHERE
When her grandparents pulled her baby cheeks...
Aisha Zee i wad just thinking the same thing haha they mustave been like. 0.o!!!!!!
They probably ended up calling the exorcist
...
thats exactly what i was thinking off
AWWW!!!
I love her personality
what ? rofl idiot
She's super cute ahaha
I love that someone can say a nice thing and people have to be jerks about it. You can see her personality by observing her.
per·son·al·i·ty
/ˌpərsəˈnalədē/
noun
1.
the combination of characteristics or qualities that form an individual's distinctive character.
Pretty sure what she’s showing, by definition, is her personality. And it’s nice… and it’s fun. It’s a happy thing. Let’s try it.
It’s similar to how you can tell your personalities suck, because of your comments.
Have a great day! 😁
she's just so gorgeous
Erin Malcolm stfu
skinnyqueen i. Taught it said gross at first so maybe he misread it llol
Erin Malcolm Not really but okay. Makeup is so heavy looks like she can barely keep up her head.
Erin Malcolm Thanks Sherlock
so you wont get stretch marks ever
Razan You can't get stretch marks or at least I don't
cool
Razan Actually I've heard some people with EDS get a lot of them, because the skin is so fragile
You definitely can. My ex-bff had this and had a bunch of them.
I have so many stretch marks, it is common in EDS because of the faulty connective tissue
EDS gang where y’all at??
sauce god I’m here my guy
Im here i got eds it the same kind she has just a thousand times worse because i have to have medal braces and rods and painful surgeries and my feet and my knees because my ligaments are so loose that it is hard to walk i cant run but i can put both of my legs over my head and also i can bend my thumb all the way back to the top of my arm by dislocating it and bending it back i van also dislocate my arms and fingers and wrists and i can dislocate my legs but that hurts so i dont but everything else hurts to bad to do or i cant but i dont have stretchy skin witch most people that i have seen do so im weird its ok
EDS gang 😅😂
sauce god the Netherlands
here!
Who else is here after the Snapchat story
Coyote Mainstream MEEEE
Is this the girl who narrated the story?
she sounds like the one who narrated
Lmaooo
Omg meeee
Anyone else really love her hair??
DoctorWhovian XD me
DoctorWhovian XD no
DoctorWhovian XD Her hair is gorgeous.
hot cheetos yum
DoctorWhovian XD reminds me of hot Cheetos
I have EDS everybody thinks it's a joke when my skin stretches but it pisses me off.
Jarrett Westwick stay strong x Eds 9/9 bendy here
Jarrett Westwick Racing I tend to make jokes out of it. It helps, and you might actually start enjoying the rude humor.
Jarrett Westwick Racing grow up
its fake?
My cousins skin doesn't stretch. But it is very thin. The littlest things can bruise her and break her blood vessels
I have type classic which is a combo of type 1, 2 and 3. I'm 44 and stuck in a recliner all day now. My life is pretty much over after 40 plus ortho surgeries and 15 non ortho. My gal bladder explode so that was a thing. My life is a loss but my hope is for the younger generation like my daughter who was inspired by my health issues is going to college to become an orthopedic doc. Keep strong and jeep up the good fight.
Sending love and hope you feel better now ❤💛.
R.I.P.
God bless.
What an inspiration and motive for you daughter to pursue medicine. good.job dad!
I have elers danlos type 3 and I'm 12 and I have seizures P.O.T.S and I have Asma when people have to grow up knowing that something's wrong with them and they are in constant pain.
Am i the only one who tried stretching my skin during the video?!??
I did and now I'm concerned because my skin did the same as hers. And also I do have hypermobility in my elbows. Soooo yeah. Fun (btw that means my elbows can bend in both directions like a swinging door)
I was as I read this comment, also I don't have EDS but my knees and elbows also bend in both directions, it doesn't have necessarily mean you have a disease it just sometimes happens
Yeap I did immediately and it hurt lol. Was just about to ask the same question.
Miruna Miru I totally did. 😂😂😂😂
Yes, you are really the ONLY FUCKING ONE.
Sorry again for the confusion. Hypermobility type is type 3, not type 2. Please just read the video description. Haha
I've EDS , too ♥
OMG I love your hair
Scarlet Checkers I have vascular eds, and my mom has eds and my brother has it too.
Scarlet Checkers I got confused about that. Making me question what type of garbage my body is.
Scarlet Checkers I have hypermobility and well I'm really looking into being a contortionist any tips for being a contortionist?
I'm craving hot cheetos
Hahaha! I have been known to have that effect!
Ashley Gregory great now I want hot cheetos to...
Ashley Gregory bro my mouth watered when I read that
Ashley Gregory HAHAHA is it because of her hair???😂
5 saucer PROBABLY 😂😂
I'd like to thank you so much. My mom found this video one night, I was experiencing the same things. My mom asked my doctor and 4 months later, we have finally found the answer. I have type 6 eds (vascular) and you were our answer, the one we had been searching for for 12 years, after hoping and praying. Thanks to you I'm learning to cope, I've been a dancer for 10 years and I've never been as good as anyone else because I'm flexible in the wrong ways, because I hurt so much. Now I'm going to physical therapy and getting better, learning things to do, wearing braces and exercising the right way. You have changed my life for the better and I can never thank you enough for being my answer. Thank you.
Thank you for this vid! I hope people will take note that it is seriously recommend that people with EDS DO NOT do "party tricks" because it can lead to serious injuries and complications. I'm glad being a contoritionist has worked out for you! It seems awesome (really.) Most of us with EDS should stay 100000 miles away from that kind of thing, though--we shouldn't show off and we shouldn't randomly show people what we can do with our bodies. It's very rare that EDS people are able to be athletes or contortionists and not end up really hurting themselves eventually. It's great that it's working out for you--but I hope the people watching your vid understand how bad contortion is for most of us!
Carolyn Zaikowski EDS has helped me playing guitar once i conquered the joint pain
Absolutely agree it is known that when young people continually do these Sideshow tricks they are further damaging their bodies. In later years they will suffer greatly much more than they would if they had not repeatedly done this. I have very mild Hypermobility and could only do things like walk with my feet backward, have lots of trouble with my knees, ankles, back, neck, wrists etc. and I am only 49 and now with other comorbidity's am now on disability :( Wish I had been diagnosed a long time ago instead of at the age of 48 could have saved myself a lot of pain.
I have EDS and served as an Infantry Soldier, played all contact sports and have never had a dislocation or sublaxed. If you develop muscle it will protect your joints but you do it gradually and keep it up.
All EDSers are different of course, we all get older and this is the problem, joints, ligaments and tendons start to deteriorate far more worse to due to our Collagen defect. It’s the pain thing with myself and little muscle problems are starting to creep in. I’m 48 and in fairly good shape but EDS is starting to affect me more but I believe that being physically active when I was younger, carrying very heavy weight as a Soldier etc has helped me in the long term, even my EDS Specialist agrees it’s helped but couldn’t believe what I put my body through.
At the end of the day, EDSers are out there spreading the word about this painful Syndrome, be it by Party Tricks, by injuring ones self, playing sport etc you name it, it’s up to the individual at the end of the day and if she’s a Contortionist and happy doing that then it’s her choice and not others to tell her she will ruin her body more by doing this, she’s developed muscle that will keep her from having subluxation and dislocation issues into the future, whereas other EDSers won’t do anything and become more severe as they age.....it’s a choice, everyone is different.
Good Luck young lady, keep on being strong and enjoy your life, you rule your EDS never let it rule you.
sarah t. I'm really curious as to how the condition aided you as a guitarist, Sarah. I too play guitar and I'm trying to imagine what the advantage would be.
Yeah, I’m 34 and just heard of this condition. It’s me to a t. I used to show off a lot of the things I could do when I was younger. Not wise at all. Can definitely cause injuries.
Stretching your ears must have been so easy !!! Lucky you!!
J Mac It was an ear stretching joke, they weren't being serious dude.
J Mac yes! exactly. we must be careful :)
I hear these types of jokes about the conditions I have and I don't have a problem with it. J Mac, not all people are so sensitive and since Scarlet seems to be a pretty chill gal, she might not have a problem with these jokes. I mean she joked about taking a shot from her neck! xD
Yes, stretching my ears was pretty easy! They are currently 9/16 and I can't seem to make them stop stretching on their own! Haha. And joke all you want. I love finding the humor in my body and my condition. It's a nice change from the usual pity party that the EDS community seems to be constantly throwing. :P
Scarlet Checkers I'm so jaleous my right one is 7mm and I can't upsize it I've been trying for a year!! and I'm happy you didn't get offended
I have EDS Hypermobility Type, when I wear all my braces I call it 'doing a Robocop' 😂 you gotta have a laugh about it sometimes because there is so much negativity surrounding it. I feel embarrased going outside with braces and supports head to toe because I get the dirtiest looks from people and questions from people like 'do you wear all those for attention or so you can get disability payment?' and the answer is no, no i don't. I wear them because if I didn't I wouldn't have a life, I would be in bed in agony, not able to move because my joints dislocate. And I'm not even on disability payment. If I could choose to go out and not look like a robot, I would. Also the question most people with a chronic pain condition will get is 'well you don't look like you're in pain, if you were in so much pain you would show it'. I am in more pain everyday than you have probably ever experienced in your lifetime. If I complained every time I was in pain you would get sick of me. I don't have any other option but to hide that I'm in pain for the sake of having an interrogation-free life. I really do feel like EDS and other chronic pain conditions need so much more awareness. People feel ashamed about going ouside when they are able to because of the dirty looks and comments they get. If they could choose not to have the condition I'm sure most of us would do anything to not have it. Its not a 'choice', you can't 'fake it' and most of us don't 'do it for attention' or to get disability. These conditions need so much more awareness. Most of them are not even 'rare' it's just that people don't know about them :) Anyway, I'll be quiet now 😂 I hope you all have a great day! 😊
Lol robocop. My friend's little cousin is convinced I'm a cyborg because of my knee braces :P
Scarlet Checkers haha! that's great lol 😂
Wow-those are horrible comments and accusations. I hope they don't happen very often. :-(
thesoothingsurf Unfortunately it happens a lot... mostly just dirty looks from people. And comments from ignorant people. Sometimes people ask what did I do to my legs and when I tell them I have a connective tissue disorder and my body likes to dislocate on me whenever it wants to the usual reply I get is 'but you're so pretty!' and I think to myself oh yes I forgot, only ugly people can have a disability... 😂 It's so silly that people think like that, I know they are only probably curious as to what's wrong with me but it baffles me that people can come back with things like that...It doesn't matter if you're old, young, large, skinny, ugly, pretty, black, white, boy or girl, chronic illness doesn't discriminate it picks whoever it wants...it's just strange to think that people who have never experienced it think that it only happens to certain 'types of people' and that's partly the reason why I think there needs to be more awareness surrounding chronic pain conditions. It's at the point where not even doctors can understand these illnesses which leads to the fact that people think EDS is 'rare' when I'm fact it's not rare, people just don't know about it. I know loads of people who have it from support groups im in yet no one has ever heard of it! And because EDS is a complex illness and there are lots of other illnesses that are I suppose symptoms of EDS people think we are making it up because they don't think it's possible to have so many things 'wrong' with you, therefore you get dirty looks and ignorant comments from people, telling you that they think you make it up for attention. I get scared to go out of the house because of the fear that people will think I'm 'attention seeking'. I feel ashamed to go out looking how I do because I hate the dirty looks I get from people. EDS and other chronic pain conditions really really do need so much more awareness. If someone asked me what was wrong and I told them I had cancer, they would understand and have empathy because everyone has heard of cancer, but if I told them I have EDS they would look at me and think what kind of made up thing is that? Because no one has ever heard of it before. But anyway, I'll stop rambling now, I have a tendency to go off on one when talking about EDS as you can probably tell ahaha :)
+Hannah Rhodes Hi! thank you for elaborating on it.
I think it's awful for people to assume things like that and draw their own conclusions and create their own scenario. So ignorant.
I'm so sorry it's happened to you and others.
I'm overwhelmed with your courage and grace. Thank you so much for taking the time to educate us about EDS.
Thank you for posting this video. I’m an anesthesia student and sharing your story and funny antics gave a good way to remember not just the disorder, but remembering the symptoms will help me keep in mind how I will take care of patients with EDS, so you are in essence helping me help others. Just wanted to share that.
My shoulders fall out of their sockets if I hold them horizontally for too long (I'm a flute player because *dumbass*) and I've never known why they do that so I might need to go to the doctor for that soon lmao. But I can relate with the joint pain even though I don't have EDS. My ankles and knees are in a perpetual state of aching and my wrists are constantly burning from pain. It's very cool that you're a contortionist, I was a gymnast for years and I became flexible to the point where I could have been a contortionist if I had really tried but I don't think I could ever stack up to you if I had followed that path xD
Little M damn I hope you get better soon
Little M I completely understand the shoulders popping out of place but with my knees and hands. Which really sucks cause I play volleyball and clarinet. (Reeds are rude btw)
Little M I have juvenile arthritis and hyper mobility and I have friends with the same that have the shoulders popping out and the pain you might need to go to a rheumatologist
Little M oh my... I can't relate to having my shoulders fall out of thier sockets but I am a flute player and I can only imagine being in the middle of a sixteenth note run when that happens ... I hope the doctor has an answer for you and that the aching and such stops soon love
that sounds terrifying
She seems really cool omg
So positive and sick as frick
|-/
yoongi deserves the world |-/
i love your positive attrition about some of this. i’m sure it’s difficult to do somethings and the future can be scary, but it’s true strength to look at the things you love
I'm a med student and actually had to study your condition recently. Thanks for sharing your story ! It's way more interesting hearing about EDS from someone who is affected than just reading books over books and power points. Your video gave me new motivation to study and gave me also a good overview of the whole disease. Wish you all the best ! Greetings :)
i also have eds. Its really good to find people who is passing through the same things as you. Hope you never lose that smile♡
I've never heard of EDS before! Great video, very interesting:)
Charlotte Jackson I have eds
Charlotte Jackson. 😰🐮
😱😨😫😵👋
Omygod you shouldn't be doing this this is not a joke oh my God oh no if you just stretch you are stretchy that does it isn't sound good
Your pfp is awesome ✊🏽🥀
In the ninth grade we had UA-cam fridays where we got to show a video under 5 mins to our class, something we wanted to share. I showed this video, to educate my classmates on my condition. Thank you
I love this video! One of the best i've ever seen explaining EDS. Thank you hon and hope youre feeling well today
The sarcasm is strong in this one at the end. lol
My Brother and I both have some form of EDS. It's never really disrupted my life in any way, just led to some jokes about how my veins are extremely easy to see. Oddly enough, my brother is one of the least flexible people I know, but he still has the stretchy skin. I've actually used it to get some really funny results, some of which my Mom has photos of. Mainly the 'Which limb is where' game. It's never really affected who I am, I guess it's just a good thing I don't like playing sports. Also, it's actually HELPED me play saxophone, as that requires a lot of finger bending.
Edit: Okay, I'm definitely a type 3.
Turtle Lord i
Thank you so much for sharing! This was something new to learn for me. I love that you have a positive attitude on it and that it works in your advantage (for the most part). Even though this video is 2 years old, I just wanted to to say it's still floating around so thanks!
Omg , I'm so glad to have found your channel. My name is Amanda, I'm 24. I was diagnosed with E.D.S when I was 17. I've suffered with this amongst other things since birth but wasn't diagnosed until later because I was in the foster care system. It was very hard to cope with but I've gotten better with dealing with it. My pain tolerance is insane. All my joints dislocate on a daily basis even after having 10 joint surgeries to fix damage and to fuse bones, joints ect, all from E.D.S. On top of it I'm developing R.A, and have a heart condition as well as R.S.D. I've had 24 surgeries all together, the rest were for my stomach, intestines ect, from E.D.S. and other complications. Anyways I just wanted to say it's nice to know there are others with E.DS. The only other person I know with it is my brother. People have always joked I should join the circus because of how flexible and strong iam. I'm pretty small so I gotta say I impress myself sometimes lol😂. In all honesty I've thought about becoming a contortionist . I think it's amazing what the body can do. Anyways I'm definitely going to sub. Sorry to ramble 😛.
Talk about lemonade out of lemons! Inspiring.
omg my ex can do that to his skin! maybe even much worse lol! we never understood why... this explains things.
Savvy Marion Unless he has an EDS diagnosis it explains nothing. A lot of things can cause stretchy skin, and some people just have stretchy skin with no cause.
I found this video a year late ahh! Thank you for raising awareness on EDS- my mother suffers from EDS, so it's always nice to see information and such great videos on it!!
Thank you for posting this and spreading awareness. I have Hypermobility eds as well. I have been struggling for a long time and just recently figured out what the heck is wrong with me. I've felt almost the constant nagging pain that most of us feel.
Your very true. And I was surprised to see someone actually embracing this rather than just listing all the down sides to it. I'm very glad to see that there's at least 1 person looking at the bright side of this
Alex Brunido there is more than 1 kind and it works in many ways(at least it seems) so I would guess some kinds just make everything shitty
Positivity goes a long way and Humor is critical when a person faces such challenge. Sadly though being a contortionist is one of the worst things you can do for EDS because there is no recovery and as she ages it will only get worse because of the forced hyper extension as EDS people do not bounce back and end up being disabled very early. Sadly avoidance of over stretching is key to staying healthy as long as possible. I understand people need a living and people want to see these things but the price is far too high :(
I'm glad you were able to use humor to help explain your situation as well as using it to your advantage.
My gf has Eds with hypermobility, i showed this video to my daughter to explain what the condition is and what it means day to day, brilliant video and simplified everything to a level a 9 year old could understand, thank-you. By the way you seem like a beautiful interesting soul. Keep up the good work, and kudos, I’m a nurse and as much as I would never say I understand I can empathise with what it’s like to have a complex chronic condition x
OMG I AM SO GLAD I FOUND THIS VIDEO 😍 I have lived with the same as you and it is so complicated and nobody understands me or even sometimes they don't believe me 💖 I'm so glad I'm not alone💙💜💙💜💙💜
I feel this hard core, I have Classical Type Ehlers danlos, my shoulder is permanently dislocated, have ibial-tibial band displacement, costochondritis, LBS, heart murmurs, Total Distal Radial-ulnar instability, scoliosis, and asthma XD
Small Frost heyyy my laundry list is about the same. i dont see many people talking of POTS/dysautonomias but ive blacked out since i was 4/5yrs old, and im 28 now. nothing has made it better, lol. i always thought i was normal until the pain hit me around age 23-24. took until 26 for a diagnosis, and now fentanyl doesnt touch my pain, but i refuse to increase the dose. i hope you have better treatment!!
try to acces medical mariujana even if you are against it. i didnt believe it helped either until i tried it helps so much with back and muscle pain it is simply glorious
Love educational stuff like this. Thanks for the video and time spent making it
AMAZING. I have ehlers danlos and I'm so happy to hear from a super cool UA-camr who gets what it's like!! Thank you SoOoOo much!
My heart goes out to you guys, keep positive and hopeful for the future sending you all lots of love xx
Thank you for speaking about this 😊 I have this condition as well 💓💓
I just recently learned i have EDS. Painful is an understament. But the "hypermobile joints" is a gift/curse. If feels great to stretch beyond limits but when not stretching body feels as if it is pulling mevdown. Many digestive issues. Always dizzy if i bend over to pick up something. ADHD. Nasty leg veins
I have the hyper-mobile type. I just found out about this, but I don’t know much about the condition. This is really informative and cool. This is so nice. I’m glad this popped up in recommended. You are awesome.
Youre so brave to be able to talk about this so optimistically ! Love you and subscribed ❤️
Type 3 is the hypermobility type. Type 2 is the classical type. Also, good video, but just wanted to make sure others know that not everyone with EDS has stretchy skin. Skin involvement is more common in the classical type. :)
*me, grabbing my rolls of fat*
is...is this the thing?
Wow. Be careful dear
Baha nooo you are just fat yo 😂
Tbh same 😂
Kaspia I feel that.
no its not eds. I have EDS and that joke i think isn't funny.
This video sparks my interest, a lot of the symptoms seem to fit me and I am at an age where having severe joint pain should not happen like it does. My doctors used to tell me it was growing pains (even though I wasn't growing) and now that I'm passed the age for growing, the pain still remains.
this video has changed my life I dislocated my right knee 6 times and my 5th one five times so much so that I am 38 and I now have severe PTSD before I saw this video I thought I was a freak and have suffered and been to therapy this video has changed my life and I will now be telling my family and friends all about this syndrome thank you I know that you have suffered with me and I cannot tell you how
The End of the video is funny😂
You can lick your elbow..thats so nice👍🏻😌🎭
I think Martina from Simon and Martin had that
Yeah Martina has EDS, lots of dislocations unfortunately
Oh my goodness!!!!! I could NOT believe when I saw the title of this video in my suggested. I have EDS too! Type three here! So glad so find someone else with it.
Just got diagnosed with eds3. Glad there is videos like this out there.
You know what else EDS is? A literal pain and I hate it! :(
Try livin with it. And im 10 btw.
Caylyn Salmonsen 😂 90% sure she meant she had it.
Yo I have the same type as this girl I think I've been told I have it and get pains but my skin is stretchy af
Me 2 I have a joint and muscular pain
My skin is SUPER tight, It hurts when someone tries to pinch my cheek because you can't actually grab my skin, I can't get some massages because my skin on my back is super tight as well and it will HURT when someone tries to stretch it.
I did a body check with my aunt a while ago (she's licensed) and the readings said that I was low on collagen. Which I thought was very strange. Anyways, I think your condition is actually quite awesome (except for the negative side effects)
A lack of collagen would usually cause the opposite symptoms. It is very strange... Perhaps the lack of collagen is caused by the lack of connective tissue in general? Anyway I'm no professional in this field and it's been 10 months- hope you sorted it out by now :d
LOVE this! thank you for making this video.. representation is so important. I also have EDS type III. EDS can be such a difficult thing to teach people about because there's so much information, and so many different parts of the body are affected by it. but I feel like you did an amazing job covering the basics in a short, easy-to-understand way! I'll definitely bookmark this video and show it to people that need to be educated on EDS 😹 also, your hair is awesome haha
So a positive thing is that you won't have strech marks, it's a very difficult condition but I love how you talk about it! In a normal situation say "sindrome" is like sick , mistake, trouble, and I just saw a normal girl with a wear condition but not broken, I didn't feel pain as I probably would have felt with other person, but you are diferent, you are that type of person that I want to talk with and not about your disease because I know you have MUCH more to show me, and that's what makes you so beautiful and strong!
thanks i am a med student will never forget EDS
ok but youre gorgeous jesus christ
artschoolwannabe k
IKR she’s beautiful
True
always gotta be one of those desperate fuckboys in the comments...
ugh! Ikr
i have to learn about this because i am learning to do anesthesia. i am reading about it in my text book now but it is always nice to get a person’s perspective to see how it affects their daily life. It also helps me to see a patient as the whole person and not just a diagnosis. I also didn’t know there were so many types. My book says there is an increased risk of blood vessel rupture, uterine rupture, bowel rupture, bleeding, mitral regurgitation, and pneumothorax but maybe each type varies slightly with the risk of these problems. Thank you for sharing.
Hi Scarlett!! Really enjoyed hearing how EDS has affected your life. I have it as well, the vascular, and what my doctor calls the classical type or skeletal. it's very inspiring to see someone who has used it to their advantage. I personally haven't found any for me lol, but I'm constantly dealing with dislocations and ruptured veins. ANYWAYS, just wanted to say hello and introduce myself... oh yeah, lol, by the way I'm Bridgette, nice to meet you.
"Who wants to do sgots outta my neck?" I fucking wheezed! Omg, you are really funny and I litteraly JUST found ur channel and imma binge all ur vids :>
You're like a real-life Stretch Armstrong.
I just love that you can crack jokes and be okay with it. that's awesome you go girl
MY roommate and best friend of 24 years has eds....she just found out she has type 4 so all the information I can get on it watching videos like this helps me to completely understand what she goes through on a daily basis.
i had no idea this existed. i thought i'm naturally flexible and somehow double jointed in many parts of my body. i never had a reasonable explanation for why my legs hurt so often, and oddly enough, my left leg in particular. weird lol cx
Right leg for me! And i cant straighten it soooo...
I can only dislocate joints on the right side of my body for some reason.
i have no name, So tell me more on how flexible you are.
Double jointed means hyper mobile joints
Is doing contortions safe for you? Can it cause future long term damage?
lol 9 months late but no it is not safe for her shes going to be in a wheel chair any way.
Sadly, no. The more we use our flexibility to do things like this, the worst our condition gets, cause our body keeps stretching, but does not repear itself the way it would do with others.
You have flexible people out there that have no problem with this, but EDS patients surely suffer the consequences of doing cortortions, ballet, ... It's basically the worst thing to do with EDS for your body ..
I danced for 6 years until I got my diagnoses and was told to stop dancing right away. I still miss it every day.
It's controversial within the EDS community as to whether it's helpful because you're building muscle to support the joint movements, or harmful because you're stretching the ligaments etc. IMO many EDSers are overreticent to train.
I wish you the best and most healthy life possible. I love how your so positive on this situation.
Believe me i m studying medicine ... And i have never seen someone with some prob. And still be positive with it .. u have turned ur weakness into strength ... A lesson learned ... Thank you for being so inspiring ... best of luck ✌️👍
I was just wondering if there is anything holistic that can be done to help with the joints? Essential oils are great or natural remedies? Or Reiki? Sorry if you already answered this I couldn't wait to ask.
I find relief with certain oils and exercises, but the relief is only temporary.
Maybe you should try Reiki! It may sounds weird but maybe it can help!
epsom salt baths!! top quality self care and relieves pain after a long hard day
try colloidal silver, hands down best natural remedy I have ever found.
Rebecca Gomez
In my experience with EDS natural remedies seem to help more than anything else I actually have a salt lamp and that helps with my joints don't ask how it just does
Imagine an old lady going to pinch your cheeks and then BAM
So I'm gonna have to take this to my doctor, but after reading on this, I think that you may have just helped me diagnose myself.
I have struggled for years with health problems and I KNEW that some of them had to go together. THANK YOU SO MUCH ❤ I know that I'm only just reading about it, but I'm excited to get to the doctor and see if i can put a name to my condition.
As another EDS person I think you did a great job on the video! Kudos chicka
I have it mine is rare I have foot problems I can't walk and my heart can cause me to have a heart atack😭 I'm only nine
Bugsbunny 80085
Stay strong man look positive
I prayed for you.
Don’t give up, you are stronger than you know. From one EDS-er, to another, you are never alone!!!
MeganPlays Msp stay tough. At your age treatments are just around the corner.
Ok
"Like, I can lick my elbow..."
**licks her elbow with a crazy look in her eyes**
Elli Kay that I cannot do
I could lick my toes if I wanted to (but that's gross). I can't lick my elbows though.
I have the same eds as you do! Always been oddly flexible and never have been hurt by the mercy games people would play. My skin doesn’t stretch at all and my hips are the weirdest/most painful part about it because they turn in so much I can practically flip my legs upside down. It’s cool to see I’m not alone here so thanks for posting!
This is awesome I,ve just been watching medical videos all night. This is by far the weirdest but coolest one
I have EDS Its a bit shit tbh
Zido HD its horrid.
I have EDS Hyper-mobility too, I'm only in the 10th grade and it has been affecting me as well . I'm in the marching band and I stand, walk, run, and everything movement you can think of for 2 - 12 hours . My knees dislocate very easily, my thumb can go to my wrist, I was able to go into splits very easily just one day out of the blue, I have extra skin, hyper extensive legs and arms , and I bruise and bleed very easily
(I am just finding this older video)
Thank you for your clear explanation. I've watched a few videos with people who have it, but I have not had a good understanding. This was helpful.
I just received my formal diagnosis for type 3 EDS today after several years of symptoms and am so stoked to finally have an answer. I can lick my elbow too haha!
Honestly I came here so she can pull her skin..
You look young (and beautiful) though? Does EDS make you age really fast? I'm so fascinated
Theoretically, my skin will not look as wrinkly when I'm older, but my joints are already very weak and I hobble around like a little old lady most of the time, so it depends on what you mean by "age really fast" haha
Scarlet Checkers Hehe :) It w9ukd be better to be wrinkly and than hobble around! My best friend has it and its pain- haha that's an understatement! Have a peaceful day xxx
awe thanks for replying youre so sweet
Scarlet's Skinpulling= Most glamorous Hellraiser look ever!! Love love
Hearing this I think I may have this condition. I’ll look out how to look after myself with it on your videos. I’m diagnosed as hyper mobile but I seem to have the other symptoms too
So I have EDS and I know my skin stretches far but I haven't seem it for myself.. *looks into mirror*
DAMN GIRL IM STRETCHY
an attractive, and courageous, young lady. thank you for the educational experience.
My mom has Eds. I really appreciate this video you made because people need to find a cure and be more aware of this disorder. My mom has hyper mobility. As well and also my younger brother too. 😊
I have EDS have had my left ankle rebuilt and left shoulder rebuilt people are always asking about it so thanks for making this
We found luffys sister!!!
i gust found out about this and is scary asf
Ode Coyett it hurts
Super well adjusted girl with a positive attitude we can all learn from.
Great explanation!
Thank you for increasing awareness of this unusual disease. I work in a lab where I used to grow cells from skin biopsies which would be then sent to a different lab to test for Ehlers Danlos. The human geneticist I worked with would often get patients who were suspected of having it since they had some symptoms. The only way to know for sure is to have the genetic test.
You’re so beautiful!!
You're beautiful.
BeastHugzHD wtf is wrong with you
This made me start to realise that I may actually have this condition myself. Maybe I should get myself checked for it. I can check a lot of the boxes regarding symptoms at least. Very informative video!
My mum has this, and he have waited *years* for this diagnosis. She recently had an ankle fusion but the screw broke and left her ankle fused almost at a 180° angle. Her joints are starting to seize up and fail and we are considering getting her a wheelchair (she is on crutches)
Thank you so so much for this video, as it helped me understand her condition and the best ways to help her
Much love from Scotland ❤❤