Thanks for the video. I'm 21 and have EDS type 3 too. It's nice to see your still smiling, I find it pretty hard sometimes especially since most people don't understand.Keep being inspiring! It's great to know there are other people out there like me :) xx
Im curious what led to your jtube? How were you unable to eat safely? I haven't heard of this. Sometimes I have trouble swallowing a bit, but never correlated the two.
I got told at an early age i have eds but had no idea how bad it can be until reading on the internet today. i just seem to suffer from very easy bruising. stay strong
Well done video on your story and the EDS type 3 condition overall. Congratulations.
I have EDS type 3, but am in my late 40s. It isn't fun, but we struggle through. I've tried to explain the syndrome simply as weak skeletal glue. Others don't grasp how that makes movement and non-movement hard work. So, I now ask do you know that uneasy feeling you get when you sit on a bar stool that's wobbly? Imagine your whole body feeling like that. It seems to help some people get it.
I did the prolotherapy thing, it doesn't work for everyone.
What it does is makes us produce more crappy collagen, and that's why it often fails for EDSers. And no you haven't been lied to, there is reading and conference sessions on prolotherapy, just not enough people know about the potential benefits for some of us.
@nakkisoddeseigh Darn, I hate to hear that it did not work, but this is the very type of information I have been looking for and there is none to be found.
Since replies are so limited could we please discussthis in detail? I would love to hear ALL feedback positive or negative you can give me because there is no sense me continuing to spend big bucks if it may dis-appoint me in the end.
Can we continue this discussion without the 500 character limit on my page please?
I hate to say it but we have been lied to... there is some treatment for Hypermobility type and has been for years.
It turns out something called Prolotherapy helps mend our lax tendons and ligaments.
I believed all that I read and heard from the doctors that they could do nothing and they almost killed me, Please learn from my mistake, research Prolotherapy on your own then ask me any questions that you would like on how it is affecting me.
like the video babes , was told i had type 2 bout 6 years ago and now been told last week that it has progressed to type 4 ... will think bout your video when i get down and it will cheer me up x keep smiling babes and live fast x
@freeliving1 How on Earth does Type 2 progress to Type 4? They are genetic mutations on different genes which cause very differing symptoms and pathologies. You either have one or the other, considering how rare Vascular EDS is, it's unlikely to be Type 4.
thanks for sharing! youre video puts a cute spin on the topic :) its always nice to see fellow EDS friends educating. you are so strong. keep smiling!
I have just found out that my friend has EDS, type IV, "Whats that"I said, I now know.
I have watched other video,s on the net, but I found yours is the best in explaining this dreadful illness. I complain daily about the weather, money, people, I will now shut up and thank my lucky stars.I hope and pray that you are doing the best you can and someone finds a cure.My god bless you and look after you.
Thank you for sharing your story. I have an eight year old son with EDS, I was trying to explain to him why not to hang on the monky bars at school. Your video helped a lot, he has most of your symptoms. I showed him the brace for your sholder and it helped him understand. He has been in braces for his legs three years now and he does not want any for his shoulders. they have come out of place twice allready. Good luck to you, and keep that positive spirt you have. Thank you!
i have 2 friends with eds, one is just very flexible thak god, bit the other one isnt doing to well and is constantly breaking or dislocateing his joints, therefore he has to wear braces.
Thanks that was brilliant I have hypermobility am 27 years old and in my town all specialists just tells me to go away. But this video has made me feel more positive thanks. alison
This is amazing. It educates people on what we EDSers go through. I like Jerome by the way :) that's something I would do! You have a great attitude about everything! Good luck with everything and stay strong!!
Type 3 has many more issues than just hypermobility Tracey. Much much more. Just google it for awhile, you'll quickly be overwhelmed by the mountains of effects type 3 has.
Thank you again for your video. I to this day learn new tricks and tweaks to help or things I do that hinder my condition! God bless from the US. Great background music too! This is part 5 of my blathering. :) start at the beginning and work your way up! Tracey
and gave me my life back. I am still able to do the job I love 3 days a week. I have been a hair stylist for 16 years. My biggest issue these days is my ribs pop out of place. I believe twisting over the shampoo bowl has contributed to this as well as being a side sleeper. When my prolo weakens due to the repetitive strain of my job, I must go back for a tune up twice a year. When the shoulder weakens it presses in to my spine while side sleeping, Causing t-1-3 to sublux as well as ribs.
I put 1'4 in lifts on some of my shoes to prevent my ankle from rolling and spraining easily. My right side is looser than my left head to toe. Yet my ankle has never had pain unless injured. My fingers do not dislocated except my thumbs. I do not believe mine is as severe as yours. My issues started at 23. I finally self diagnosed after 3 different doctors couldn't, at the age of 30. I am healthier at 40 than I was at 30 because of prolotherapy and so grateful it worked for me.....
I slept in a neck brace for 5 years. I started having improvement in my neck after the 4th round of prolo. In the last 11 years, as I acquire new pains, I have the areas injected by prolo. Wrists done twice...no pain in two years. Hips done twice each...pain gone. I started proloing my shoulders to stabilize my lower neck. My shoulder slumped forward just as your did. After prolo it was straight and that was the ticket to CURING my chronic neck subluxations.
Thank you for making this video. I have type 3, which is my understanding the only affect is the hypermobility issues. Are you gastric issues related to something else? It amazes me how differently each individual is affected by this. My neck would sublux EVERY night. I used to see a chiropractor 5 days a week, until I started prolotherapy injections. the ONLY treatment for ligaments. I started them in 2000 at the age of 30 when I was like you. Spending lots of time in pain unable to much.
@dilateyourmind So glad prolotherapy worked for you, im saving up to have it done for my hypermobility, has your prolo still kept your joints stable is there any side affects i should know about cause i need it done on my ligaments along my spine which kinda scares me a bit!
You are so strong. God bless you!
gladitsnotme 3 weeks ago
luv u nicoleeeeeeeee!!!
vivisonga1111 4 months ago
Thanks for the video. I'm 21 and have EDS type 3 too. It's nice to see your still smiling, I find it pretty hard sometimes especially since most people don't understand.Keep being inspiring! It's great to know there are other people out there like me :) xx
MissScorpioBabe 4 months ago
Thank you for making this video. I have hypermobility type as well, though not nearly as severely. HUGS.
elizabethlea27 4 months ago
Im curious what led to your jtube? How were you unable to eat safely? I haven't heard of this. Sometimes I have trouble swallowing a bit, but never correlated the two.
scottssister1 6 months ago
I got told at an early age i have eds but had no idea how bad it can be until reading on the internet today. i just seem to suffer from very easy bruising. stay strong
stewartnokia 6 months ago
Well done video on your story and the EDS type 3 condition overall. Congratulations.
I have EDS type 3, but am in my late 40s. It isn't fun, but we struggle through. I've tried to explain the syndrome simply as weak skeletal glue. Others don't grasp how that makes movement and non-movement hard work. So, I now ask do you know that uneasy feeling you get when you sit on a bar stool that's wobbly? Imagine your whole body feeling like that. It seems to help some people get it.
3075bridget 6 months ago
I did the prolotherapy thing, it doesn't work for everyone.
What it does is makes us produce more crappy collagen, and that's why it often fails for EDSers. And no you haven't been lied to, there is reading and conference sessions on prolotherapy, just not enough people know about the potential benefits for some of us.
nakkisoddeseigh 7 months ago
@nakkisoddeseigh Darn, I hate to hear that it did not work, but this is the very type of information I have been looking for and there is none to be found.
Since replies are so limited could we please discussthis in detail? I would love to hear ALL feedback positive or negative you can give me because there is no sense me continuing to spend big bucks if it may dis-appoint me in the end.
Can we continue this discussion without the 500 character limit on my page please?
77095066 7 months ago
I hate to say it but we have been lied to... there is some treatment for Hypermobility type and has been for years.
It turns out something called Prolotherapy helps mend our lax tendons and ligaments.
I believed all that I read and heard from the doctors that they could do nothing and they almost killed me, Please learn from my mistake, research Prolotherapy on your own then ask me any questions that you would like on how it is affecting me.
I want to help everyone I can get the truth!
77095066 8 months ago
like the video babes , was told i had type 2 bout 6 years ago and now been told last week that it has progressed to type 4 ... will think bout your video when i get down and it will cheer me up x keep smiling babes and live fast x
freeliving1 8 months ago
@freeliving1 How on Earth does Type 2 progress to Type 4? They are genetic mutations on different genes which cause very differing symptoms and pathologies. You either have one or the other, considering how rare Vascular EDS is, it's unlikely to be Type 4.
isaacHunt2 2 months ago
Excellent video so glad I found it :)
Elfins 8 months ago
thanks for sharing! youre video puts a cute spin on the topic :) its always nice to see fellow EDS friends educating. you are so strong. keep smiling!
<3Bee
beestarr72 8 months ago
I have just found out that my friend has EDS, type IV, "Whats that"I said, I now know.
I have watched other video,s on the net, but I found yours is the best in explaining this dreadful illness. I complain daily about the weather, money, people, I will now shut up and thank my lucky stars.I hope and pray that you are doing the best you can and someone finds a cure.My god bless you and look after you.
potbasher 9 months ago
Thank you for sharing your story. I have an eight year old son with EDS, I was trying to explain to him why not to hang on the monky bars at school. Your video helped a lot, he has most of your symptoms. I showed him the brace for your sholder and it helped him understand. He has been in braces for his legs three years now and he does not want any for his shoulders. they have come out of place twice allready. Good luck to you, and keep that positive spirt you have. Thank you!
darlene9989 9 months ago
i have 2 friends with eds, one is just very flexible thak god, bit the other one isnt doing to well and is constantly breaking or dislocateing his joints, therefore he has to wear braces.
xAbigailx16 10 months ago
Thanks that was brilliant I have hypermobility am 27 years old and in my town all specialists just tells me to go away. But this video has made me feel more positive thanks. alison
alison20092010 10 months ago
This is amazing. It educates people on what we EDSers go through. I like Jerome by the way :) that's something I would do! You have a great attitude about everything! Good luck with everything and stay strong!!
aLittleBitLonger0095 10 months ago
Type 3 has many more issues than just hypermobility Tracey. Much much more. Just google it for awhile, you'll quickly be overwhelmed by the mountains of effects type 3 has.
surferbuddhist 10 months ago
Thank you again for your video. I to this day learn new tricks and tweaks to help or things I do that hinder my condition! God bless from the US. Great background music too! This is part 5 of my blathering. :) start at the beginning and work your way up! Tracey
dilateyourmind 1 year ago
and gave me my life back. I am still able to do the job I love 3 days a week. I have been a hair stylist for 16 years. My biggest issue these days is my ribs pop out of place. I believe twisting over the shampoo bowl has contributed to this as well as being a side sleeper. When my prolo weakens due to the repetitive strain of my job, I must go back for a tune up twice a year. When the shoulder weakens it presses in to my spine while side sleeping, Causing t-1-3 to sublux as well as ribs.
dilateyourmind 1 year ago
I put 1'4 in lifts on some of my shoes to prevent my ankle from rolling and spraining easily. My right side is looser than my left head to toe. Yet my ankle has never had pain unless injured. My fingers do not dislocated except my thumbs. I do not believe mine is as severe as yours. My issues started at 23. I finally self diagnosed after 3 different doctors couldn't, at the age of 30. I am healthier at 40 than I was at 30 because of prolotherapy and so grateful it worked for me.....
dilateyourmind 1 year ago
I slept in a neck brace for 5 years. I started having improvement in my neck after the 4th round of prolo. In the last 11 years, as I acquire new pains, I have the areas injected by prolo. Wrists done twice...no pain in two years. Hips done twice each...pain gone. I started proloing my shoulders to stabilize my lower neck. My shoulder slumped forward just as your did. After prolo it was straight and that was the ticket to CURING my chronic neck subluxations.
dilateyourmind 1 year ago
Thank you for making this video. I have type 3, which is my understanding the only affect is the hypermobility issues. Are you gastric issues related to something else? It amazes me how differently each individual is affected by this. My neck would sublux EVERY night. I used to see a chiropractor 5 days a week, until I started prolotherapy injections. the ONLY treatment for ligaments. I started them in 2000 at the age of 30 when I was like you. Spending lots of time in pain unable to much.
dilateyourmind 1 year ago
@dilateyourmind So glad prolotherapy worked for you, im saving up to have it done for my hypermobility, has your prolo still kept your joints stable is there any side affects i should know about cause i need it done on my ligaments along my spine which kinda scares me a bit!
LucaBlightBadass 2 months ago