I was diagnosed in 2006 and also score a 9/9. I've felt really alone for quite some time because no one ever knows what EDS and rarely believe in it's existence when I talk about it. So glad I searched EDS on CZcams and so glad I found your channel.
I'm 50 and can still do all these "tricks", legs behind the head etc. I'm just starting this journey, doctors don't connect the dots very well. I finally am being referred for an EDS consult via the Veteran's affairs. I'm praying for a less damaging type. This explains my life so well. Thanks for your videos.
I don't have EDS but I am hyper mobile and also score a 9/9! I'm just looking into things and came across your videos. I wish you and your daughter the best.
I also have hypo mobility syndrome, I’ve never really come across anyone else have what I have 🙂I also have lots of other problems too 🥰. P.s I love you videos xx
I was diagnosed with EDS by a gastrointestinal specialist and basically I throw up whenever I eat, also having POTS. Just so you guys don't freak out, you can be flexible (which is common) and not have EDS. When you have EDS, you have other symptoms too. I'll almost pass out, and I throw up whatever I eat. So please, don't freak out if you're able to do all of these things... please
I also have Eds mcas and pots Ive been having problems so long and I was ignored I really hope they educate doctors so we can start earlier management to help us live with less pain!
my grandmother had eds. my skin stretches just like yours and my pinky does the same thing as well. my thumb however doesnt and im not sure if i can do all those other tricks you did. i tried seeing a geneticist once and they blew me off. i have had two bowel obstructions with no answer on ct or mri and am very underweight which led doctors to believe i have an ED. which i do not have in the slightest. im really worried that i may die if i dont get the correct diagnosis soon as my digestive system seems to be failing and i keep losing more muscle mass and weight overall. i just got my NJ tube removed a month ago and they put me back on a normal diet which i can tell is not working by my BMs. sorry if tmi. i can see the like. malabsorption. for some reason since i have such bad anxiety as well and a history of mental health it seems that no hospitals in my area at all, i mean even within 2 hours distance are taking my case seriously. im at a loss and worried, do you have any tips?
I'm glad I'm not alone here. No one takes my case seriously either. I have so many issues and they can't find any explanation so they just shrug me off.
I've found I've stiffened up as I've got older with EDS...Although I find physio is now making me loosen up again so can't win really lol I've still not had genetic tests to identify if I have any of the other types but think I'd rather not know anyway 😂
I've got 9/9 of the score but i have no pain or dislocation. I have stretchy skin and papyraceous scars and some other problems. I didn't meet the 2017 criteria but I meet Brighton criteria. Do i have eds? Both my mother and my grandma are hypermobile, too.
It is velvety smooth and stretchy skin that I have and artists usually say its strange how my skin just 'grabs' the ink so easily. sometimes lines splay a little and if the artist is heavy handed the ink can scar. But mostly no problems, so I guess I will keep getting ink :)
I have multiple tattoos and a cover up, I got diagnosed with EDS at 15. My skin grabs and holds ink really well. My cover up was smooth sailing and the artist even commented on how crazy it was that the cover up went over so easily.
Hello i adore your videos and all the best for your journey with this condition. I was wondering if u do physiotherapy and whether or not u think that it helps the chronic pain associated with joints and whether if we can reduce the chronic pain associated with our joints if we get into the healthiest and strongest physical state possible THank u so much xo
Hi, great question. The answer is absolutely yes, and unfortunately no as well. Dusty for example has had many attempts a Physio and the amount it hurt her and burnt he out was too damaging. Her specialists have asked that she does not do it at this stage, the fear is early onset of arthritis. just one small session a week was resulting in her unable to walk at all for days after, with severe pain. I recently stopped my own Physio, we had run out of ideas on how to stop my hips dislocating, but i keep up with my exercises. It can build muscle to support joints, but that is only support you gain, I still dislocate even at my most elite in fitness.
My Dr. Called My : "Hypotonia" / EDS / "Elhers Danlos Syndrome" back in ( March 2019 ) a few Months ago. He Had His Assistant / Intern Guy, Type it into the Computer. So I Don't know What Type OF EDS It is Or Anything. I See another Dr. This Tuesday For MORE Testing and Whatever else She Has to do to Me. I Hope This New Dr. Lady Can Figure out what Going on with me. For Year's NO ONE has been able to Give Me and my Mom Any Answers. We just GET MORE QUESTION'S, then ANSWER'S , Alway's Wondering why ? .
Wow holy smokes and it doesn't hurt you if I did something like that I think I would be stuck there forever I can't move my body like that and please be very careful I'm thinking of you
Gavin Northern the majority of them mean nothing but I’m a mad art collector, so I pick the pieces more as a way of collecting a piece of work for an artist.
I adore your tattoos. They're beautiful.
(I have EDS, too).
I appreciate you taking the time to make these videos and talk about EDS.
I was diagnosed in 2006 and also score a 9/9. I've felt really alone for quite some time because no one ever knows what EDS and rarely believe in it's existence when I talk about it. So glad I searched EDS on CZcams and so glad I found your channel.
I'm 50 and can still do all these "tricks", legs behind the head etc. I'm just starting this journey, doctors don't connect the dots very well. I finally am being referred for an EDS consult via the Veteran's affairs. I'm praying for a less damaging type. This explains my life so well. Thanks for your videos.
WOW! I would've never guessed you're 50! you look beautiful!
Thank you for sharing this! You are incredible! We are always cheering you on!
I don't have EDS but I am hyper mobile and also score a 9/9! I'm just looking into things and came across your videos. I wish you and your daughter the best.
Iwantalovelyheart is that possible? Did you go to the doctor? I heard that if you have more than 4 it's a sing of EDS (I'm not a expert)
You are so pretty. Thank you for educating us about this!
I also have hypo mobility syndrome, I’ve never really come across anyone else have what I have 🙂I also have lots of other problems too 🥰. P.s I love you videos xx
Your ink work is beautiful. I especially love your hand tattoos.
I am a fellow 9/9! My doctor jokes that I have to get full marks on everything.
You are such a beautiful lady and most of all a wonderful mother
I love your videos! Thank you for this educational one
I would like to ask if the feeding tube is also due to the condition you mentioned?
I was diagnosed with EDS by a gastrointestinal specialist and basically I throw up whenever I eat, also having POTS.
Just so you guys don't freak out, you can be flexible (which is common) and not have EDS. When you have EDS, you have other symptoms too. I'll almost pass out, and I throw up whatever I eat. So please, don't freak out if you're able to do all of these things... please
The shoulder trick, wow!
thanks for making this video.
I also have Eds mcas and pots Ive been having problems so long and I was ignored I really hope they educate doctors so we can start earlier management to help us live with less pain!
Thanks for sharing
I have hipomobilaty type 4 EDS it is a nightmare when I have a flear up
my grandmother had eds. my skin stretches just like yours and my pinky does the same thing as well. my thumb however doesnt and im not sure if i can do all those other tricks you did. i tried seeing a geneticist once and they blew me off. i have had two bowel obstructions with no answer on ct or mri and am very underweight which led doctors to believe i have an ED. which i do not have in the slightest. im really worried that i may die if i dont get the correct diagnosis soon as my digestive system seems to be failing and i keep losing more muscle mass and weight overall. i just got my NJ tube removed a month ago and they put me back on a normal diet which i can tell is not working by my BMs. sorry if tmi. i can see the like. malabsorption. for some reason since i have such bad anxiety as well and a history of mental health it seems that no hospitals in my area at all, i mean even within 2 hours distance are taking my case seriously. im at a loss and worried, do you have any tips?
I'm glad I'm not alone here. No one takes my case seriously either. I have so many issues and they can't find any explanation so they just shrug me off.
I've found I've stiffened up as I've got older with EDS...Although I find physio is now making me loosen up again so can't win really lol I've still not had genetic tests to identify if I have any of the other types but think I'd rather not know anyway 😂
Physio seems to be a double edged sword for us EDSrs, best of luck with your body.
Are you from Australia? I also have EDS :) we don't know what type though, but my cardiologist thinks it could be a vascular crossover
Greetings :) . Thanks that to video for eds symptoms. This is so helpful medicine student.
İ hope get will be soon !
My pleaseure
your tattoos are beautiful!
I've got 9/9 of the score but i have no pain or dislocation. I have stretchy skin and papyraceous scars and some other problems. I didn't meet the 2017 criteria but I meet Brighton criteria. Do i have eds? Both my mother and my grandma are hypermobile, too.
What's the sitch on tattoos + EDS? Since we zebras have skin issues I'm very curious! Have you encountered any problems?
It is velvety smooth and stretchy skin that I have and artists usually say its strange how my skin just 'grabs' the ink so easily. sometimes lines splay a little and if the artist is heavy handed the ink can scar. But mostly no problems, so I guess I will keep getting ink :)
Piper Hedger yes i have many tattoos and weird scared ones
My mother and me have a hard time taking ink in we have to hold skin really tight
I have multiple tattoos and a cover up, I got diagnosed with EDS at 15. My skin grabs and holds ink really well. My cover up was smooth sailing and the artist even commented on how crazy it was that the cover up went over so easily.
Hello i adore your videos and all the best for your journey with this condition. I was wondering if u do physiotherapy and whether or not u think that it helps the chronic pain associated with joints and whether if we can reduce the chronic pain associated with our joints if we get into the healthiest and strongest physical state possible
THank u so much xo
Hi, great question. The answer is absolutely yes, and unfortunately no as well. Dusty for example has had many attempts a Physio and the amount it hurt her and burnt he out was too damaging. Her specialists have asked that she does not do it at this stage, the fear is early onset of arthritis. just one small session a week was resulting in her unable to walk at all for days after, with severe pain.
I recently stopped my own Physio, we had run out of ideas on how to stop my hips dislocating, but i keep up with my exercises. It can build muscle to support joints, but that is only support you gain, I still dislocate even at my most elite in fitness.
thank u so much for your reply i really appreciate it. wishing u all the best for yourself and ur daughter xoxo
can one that is hypermobility get in front Split
My Dr. Called My : "Hypotonia" / EDS / "Elhers Danlos Syndrome" back in ( March 2019 ) a few Months ago. He Had His Assistant / Intern Guy, Type it into the Computer. So I Don't know What Type OF EDS It is Or Anything. I See another Dr. This Tuesday For MORE Testing and Whatever else She Has to do to Me. I Hope This New Dr. Lady Can Figure out what Going on with me. For Year's NO ONE has been able to Give Me and my Mom Any Answers. We just GET MORE QUESTION'S, then ANSWER'S , Alway's Wondering why ? .
You are soo beatifulll and elastic
Wow holy smokes and it doesn't hurt you if I did something like that I think I would be stuck there forever I can't move my body like that and please be very careful I'm thinking of you
What kinda dr diagnoses eds?
This is a super dumb question, but as your skin is so stretchy did you get any stretch marks from dusty?
Not a dumb question i have type 3 eds and yes i recieved stretch marks bad cause age of conception and size at conception
yes* i love your story
i also have ehlwrs danlos with multiple tats ahha ys
Am double joint in my fingers
My dog is Ralphie too ❤
Brittany Lockhart here is dusty....
What do your tattoos mean
Gavin Northern the majority of them mean nothing but I’m a mad art collector, so I pick the pieces more as a way of collecting a piece of work for an artist.
I just have the stretchy skin and like two points on the brighton scale. could this be eds too? what other things can cause m skin to be so stretchy?
Wtf
Why can I do all of those...
Even the skin shit...
😨😨😨
EWWWWWWWWWWW this is so gross
Tattoos are awful
Organized Chaos ... just like your attitude.
Organized Chaos that’s pretty rude m8. I mean it’s okay to have an opinion but those are her personal choice
Organized Chaos LOL 😂