I also have EDS and set up a blog to raise awareness about EDS and invisible disabilities. Copy and paste the following into your browser hideandseekdisabilities.blogspot.com
@rklhughes it affected me as a toddler a lot but unfortunately i didnt know what was wrong with me until i was 16. so be greatful your drs are being helpful. you are very blessed and im sorry your son has to deal with this but i can assure you, it will make you and him a stronger person because of it, as it did for me and my parents as well.
Ive got diagnosed with hypermobility syndrome but im different im not flexible at all, and i have realy strong muscles, i can do 60 pushups. I have minor scoliosis, i have minor stretchy skin my joints click alot and my joints do feel lax. I think its cause ive done manual labour and weightlifting alot of my life. Wierd huh confuses me when i dont hit all the critierea.
Hello there, I to have EDS since I was born and I'm 20 now..... I have type 6 and 7a & 7b, I was born with my hips dislocated and I always wanted to meet or talk to a person that had this syndrome as well..... Having this illness puts many struggles on life and some people don't understand sometimes how it feels to be in a world of pain thats 24/7.... Though we may not look as if there's many things wrong with one another we tend to hide it with a smile here and there..... To those who have EDS
Hey guys/girls! Type 3 here and i try to do some exersices and swim alot. Ifeel like swimming in warm water is the best for now since im having problems moving at all, its nice to move abit after beeing unable to move for a long time :) tho id rly like to get so good that i could do some kickboxing or somthing like that, just hope i can continue to use the computer
Also it is not a disease. I like to think that it makes life more interesting and it tests you on how you deal with things. I have the same symptoms as you but I found my heart is fine and my doctor said to try and work out and strengthen the muscles around your joints.
You know, i always thought turning my legs all the way around, the shoulder mobility, legs behind my head, some contortionist shit was normal. It's taken quite a toll on me now, but i'm stupid and continue to do it. And then complain when I dislocate/subluxate a joint haha
studying this for a biochem test on monday. you seem to be doing ok which is really good. out of curiosity do you get cuts easy or when you get them does it take alot longer for them to heal? also i would not stretch your skin like that... we read a clinical case were some child let some one do it to him and they tore a bit of it off...
Hi there Gabby, I'm 26 and was diagnosed with eds when I was just 2 weeks old. Back then my mum was told it was a rare condition with 1 in every 30,000 but now it seems much more common. It's good to see yourself and other people with eds as for years, I felt alone with not knowing anyone with the condition. Maybe we can chat further sometime? Take care and don't over do it. :-)
Hey Gabby, great videos. I also have mostly joint and tissue related EDS. Yours seems a bit more severe than mine. I also have my heart valve checked regularly. I wanted to ask you, do you have metobolism issues? Mine is fast.....really fast, and the doctors can't figure it out. They say my thyroid is fine, checked for lots of cancers, and much more. Its weird.......
@OddManOut13 I have been tested for this metabolism issue for two years now, nobody gets it. I was thinking there may be an EDS angle. In any event, I am glad you are making videos for people, I commend you! Take care Gabby!
Haha remember at school where we played this game called craven and you bent each others fingers back until it hurts, i was the champ due to my eds lol!!!
lol I can do all that and twist my wrist all the way around but the more you do it later it will hurt verryyyy badly like right now my right hip is just OMG and now it's radiating down my leg I go to a pain doctor now cause yeah they can't do anything for you like they could for others but my pain doc quit maybe cause he was old I don't know lol but this new pain doc says oh yeah it's your sciatic nerve I can burn it very young knows nothing of ehlers take it easy on the popping joints trust me
Hi-- Are you sure you have hypermobile type? Usually the skin laxity and some of the other symptoms you mentioned are classical type (old type I-II). Just hoping you've got the correct subtype from a geneticist since it can affect treatment and precautions along with preventing problems. They're so much more detailed and specialized than other docs in making the correct type of diagnosis. I've got classical type-- so I know it too well. Wishing you all the best!!! Thx for sharing w/all!
It sux when all of your friends are in gym class playing and when you finally make a home run in kickball, your legs go all woohoo and your knees and ankles go pop. Then you are sent downward to a dislocated shoulder and wrist on the asphalt. Let's not forget popping fingers! Yeah, I can totally relate to you, but it's kinda nice to know that there are other teens out there with EDS :3
I am sure that I got it, stretchy skin, can do weird things with limbs, but I go pump iron take sun and all that stuff. I can take my legs behind my head, I was pretty weak when i was little, but I did karate for 2 years, swam for 3 years, and now I am as strong as normal people.
are the joints on your spine strong? you seem to have good posture etc. my spine sublaxes easily but apparently i don't have eds when the doctors tested.
@200laura002Also if you love something i believe that just because of this you should stop. so i wake up sore, bruised, swollen, or in one case dislocated. but the pain of not doing the martial arts is nothing compared to the pain of my condition. But like i said before it depends on you, but trust me dont stop being active because of it, it'll only make it worse keeping supple and strong will always help, and my muscle bulk now acts as a sort of padding ;)
Hi gabby. My daughter and I just watched yr video. She is 17 and has EDS type 3 too. All the same symptoms as you. It makes her feel less alone with all that she goes through to be able to watch things like that. Thankyou (and you are georgous)
'I can do that with my joints and I have stretchy skin like that. Only I have no joint pain and I have only been injured twice in my life. Although my ankle pops out of joint all the time. I know I don't have this disease but my joints are extra flexible.
I just found out this week that I have HEDS. I was very in to sports when I was little but I kept hurting myself and now I know why. I was playing basketball for high school and I kept hurting my ankles. I went to the junior varsity team after my freshman year and the first practice my ankle just gave out and I couldn't even walk for 3 days. I was on cruches for almost a month. I also developed GI problems. I missed my Senior year of High School because I was so sick.
I have EDS as well, actually it is kind of rare. Some people get diagnosed EDS just by seeing a doctor but I got diagnosed by a skip biopt. EDS is a gene problem. And when you have it. your father or mother has it too. ass well your children will have a 50% chance themselves. Just wanted to say that.
My daughter is 3 years old and still unable to walk, the doctors seem to think she also has type 3 EDS and I was curious if this effected you when you were a a toddler, did you have mobility issues?
Like my daughter tries to walk, however she is super stumbly if that makes sense, she stumbles from one place to another...
@rklhughes When I was a toddler I could walk, i just stumbled a whole lot. It seems the taller i got the more i would fall. When i was 3 i broke my elbow by simply loosing my balence on a playground. I was heavier as a child so when i fell it tended to hurt more, now I am thin so it doesnt hurt as much when i fall but i fall a lot more frequently.
@rklhughes I have eds and was unable didnt walk till i was nearly 4. after that my parents found it very hard to get me to walk anywhere. I didnt get diagnosed til i was 27 even though i had symptoms and obvious signs my whole life and as a result im very affected by eds now. If you suspect your daughter has eds or is having any development delay along with pain then definatly push to get her seen by a dr who knows eds.
@rklhughes when i was a baby my legs were put into casts to try to hold them together. that was a long time and a lot of knowledge ago, but although i have been unable to walk more than a few times in my life, with braces, physical therapy and whatever else good doctors had to offer at the time i got it back. eventually, it'll get worse and there won't be a whole lot you can do, but at 3 years old the possibilities are endless. my 4 year old has it and can now write his name! sometimes.
Thanks for making the video. I have EDS Hypermobility. The geneticist who diagnosed me told me that this is one of the most common genetic issues that she sees. So it is more common than 1 in 10,000. She said it is "in the hundreds". And there are studies from Iraq and Nigeria where 34% and 43% of those populations have EDS respectively. So almost a majority of people.
@EDSguy1 yeah, it seems that people never really put EDS in consideration when they have a lot of problems with their joints. the numbers are increasing because EDS is becoming more mainstream and their symptoms seem to match. my moms friend had all the symptoms i had, and when she was a kid she was just clumsy. so i think more people are becoming more aware.
Fellow EDS'er here. I was diagnosed around 20. However I had always been told by physio's and doctors and was treated for hypermobile joints. My main areas of issue is scarring, my hands, jaw and my hips dislocate when I sleep on them.
I used to be able to get my legs behind my head but I have stopped due to a spinal injury , I still can but the pain is too bad.
I have the same thing. I have CEDS and Hypermobility.
I am looking for others in the USA with the disorder. I was just recently diagnosed. I started a blog, I might want to use some of your videos with your permission. It talks about how I cope and it puts a light heart on a tough way to live...
@gabbynotgorgeous be careful with the swimming. I am 13, and I was diagnosed after extreme pain while swimming because I was popping shoulders and hips. And they also took me out of P.E./ school sports.....
@200laura002 your not suppose to, I mean if the doctors had there way I would never move lol but that is also because I didnt know until I was 18-19 and I was an elite athlete which excelerated my joint destruction they say most likely due to everything I will be in a wheelchair by the time I am 30, so sports especially if its a more severe case of eds are not advised
@200laura002@200laura002 it totally depends on you. I have the Tenascin X deficiency type, but before i was diagnosed two years ago in Sheffield (im a 17 year old Brit) i totally loved martial arts, and i was fairly good at cage fighting/mixed martial arts ive done Judo, Taek Kwon Do, BJJ, Kickboxing, and now Kung Fu. My doctor thought i was an idiot to begin with, but Ive noticed the more i did it the better i felt. My pain barrier grew, and i built muscle so im now 13.5 stone.
@200laura002 it totally depends on you. I have the Tenascin X deficiency type, but before i was diagnosed two years ago in Sheffield (im a 17 year old Brit) i totally loved martial arts, and i was fairly good at cage fighting/mixed martial arts ive done Judo, Taek Kwon Do, BJJ, Kickboxing, and now Kung Fu. My doctor thought i was an idiot to begin with, but Ive noticed the more i did it the better i felt. My pain barrier grew, and i built muscle so im now 13.5 stone.
Gabby SOOOOO gorgeous, Iam an EDSer as well, I greatly admire your attempt and success at educating others about EDS and its core issues!!! You are a very bright and brave young woman!!! Keep your chin up;cures are not so far away!
Gabby SOOOOO gorgeous, Iam an EDSer as well, I greatly admire your attempt and success at educating others about EDS and its core issues!!! You are a very bright and brave young woman!!! Keep your chin up;cures are not so far away!
Try Pilates for stabilizing your joints. Start slow with very small movements and build up strength. Among many other joints, I can subluxate my shoulders on purpose or reaching for something a little to far away. I've been able to strengthen my shoulders and even been able to strengthen my arches so my feet aren't in pain as much. My feet were never completely flat, but were headed that way. I have to be consistant with the exercises or I'm back in more pain in a few days.
I have EDS hypermobility type aswell. I was diagnosed just this year but have had it my entire life. I was wondering if you have fibromyalgia or scholeosis aswell? Also, do you have to take extra vitamins daily? I am fairly new to the disease and am looking for people who have it so for communication about the disease.
I hope you are doing well and without pain today. :)
@angellicinnocence I do have scholeosis, no fibromyalgia from what I know of. I just got properly diagnosed, which was quite a heavy thing to handle at 15. I have really not started to do anything special since being diagnosed. I really should start doing that. I am without pain for the most part today thanks for asking =] and same to you. If you want to know anything else message me and I'll be happy to answer
@gabbynotgorgeous i have fibromyalgia and eds. it is progressive as a disorder and gets worst as you get older. you should not do "tricks" as it can progressively worsen your condition as well.
Hy Im from Romania from the Transylvania part and I have EDS but until the 90's not even in Hungary they didnt knew what I had. I have the level 2 type. Im 22 y old. Many times I feel exousted and sometimes i feel the pains. but u have to realize that everyone has problems, its just another thing to live with. smile a lot, search happiness! and everything will be OK. Good that u uploaded ur video!
yeah, well the childrens hospital told me to do it just as a precausion, because im young and my heart looks healthy now, but that may not be the case in a few years
I Was Wondering If you Could Help Me , I Think I Have This Syndrome cause i get very painful joints and i can bend my arm back farther than yours actually. if you could message me it'd be great (:
same thing. could you watch my "robyn's got talent" video, another user on youtube said by watching the video, he thinks I may have EDS, and I started to wonder too. I thought I was just naturally flexible, but sometimes my joints hurt, like my knees, and sometimes my leg muscles & my ankle hurts. But sometimes, it's elsewhere in my joints.
This has been flagged as spam show
I also have EDS and set up a blog to raise awareness about EDS and invisible disabilities. Copy and paste the following into your browser hideandseekdisabilities.blogspot.com
abistaff 5 days ago
I have type 3 and I can turn my arm 360 degrees
DezCailen 6 days ago
@rklhughes it affected me as a toddler a lot but unfortunately i didnt know what was wrong with me until i was 16. so be greatful your drs are being helpful. you are very blessed and im sorry your son has to deal with this but i can assure you, it will make you and him a stronger person because of it, as it did for me and my parents as well.
good luck and best wishes!!
katelynisreallyhot 1 week ago
Ive got diagnosed with hypermobility syndrome but im different im not flexible at all, and i have realy strong muscles, i can do 60 pushups. I have minor scoliosis, i have minor stretchy skin my joints click alot and my joints do feel lax. I think its cause ive done manual labour and weightlifting alot of my life. Wierd huh confuses me when i dont hit all the critierea.
LucaBlightBadass 1 week ago
Hi! I also have EDS type 3 :) It was a relief to finally be diagnosed after years of wondering what the heck was up!
neartpuppy 1 month ago
Nice belly button ring haha... I have EDS too! how old are you?
Zamester 1 month ago
Hello there, I to have EDS since I was born and I'm 20 now..... I have type 6 and 7a & 7b, I was born with my hips dislocated and I always wanted to meet or talk to a person that had this syndrome as well..... Having this illness puts many struggles on life and some people don't understand sometimes how it feels to be in a world of pain thats 24/7.... Though we may not look as if there's many things wrong with one another we tend to hide it with a smile here and there..... To those who have EDS
skinticket113 1 month ago
Hey guys/girls! Type 3 here and i try to do some exersices and swim alot. Ifeel like swimming in warm water is the best for now since im having problems moving at all, its nice to move abit after beeing unable to move for a long time :) tho id rly like to get so good that i could do some kickboxing or somthing like that, just hope i can continue to use the computer
piggyfrogg 2 months ago
Such a cute girl I have Ed's type 3 also have dislocated both knees before and can do both shoulders.
Nathan6845 2 months ago
Also it is not a disease. I like to think that it makes life more interesting and it tests you on how you deal with things. I have the same symptoms as you but I found my heart is fine and my doctor said to try and work out and strengthen the muscles around your joints.
Takoda666 2 months ago
We are prone to sublocations and dislocations also I have it and my dad found a tea that helps a lot with the pain. Its called horsetail tea :)
Takoda666 2 months ago
You know, i always thought turning my legs all the way around, the shoulder mobility, legs behind my head, some contortionist shit was normal. It's taken quite a toll on me now, but i'm stupid and continue to do it. And then complain when I dislocate/subluxate a joint haha
luckypharms 3 months ago
studying this for a biochem test on monday. you seem to be doing ok which is really good. out of curiosity do you get cuts easy or when you get them does it take alot longer for them to heal? also i would not stretch your skin like that... we read a clinical case were some child let some one do it to him and they tore a bit of it off...
jvry8c 4 months ago
hey girl Im type 1 <3 we zebras need to stick together
alliefaye322 4 months ago
HI TO YOU TOO! =)
TheCassiFish 4 months ago
@charsignar93 keep hanging in their there ;) I also hav type 3
broadwaydiva37 4 months ago
Hi there Gabby, I'm 26 and was diagnosed with eds when I was just 2 weeks old. Back then my mum was told it was a rare condition with 1 in every 30,000 but now it seems much more common. It's good to see yourself and other people with eds as for years, I felt alone with not knowing anyone with the condition. Maybe we can chat further sometime? Take care and don't over do it. :-)
KatieMarieWe 5 months ago
I have this thing too... used to be fun bending and twisting for friends in school.
Misana 5 months ago
you have no idea how encouraging it is to find someone my age with EDS!! i have type 3 sevear in a wheel chair and walker and yeah
charsigner93 5 months ago
Hey Gabby, great videos. I also have mostly joint and tissue related EDS. Yours seems a bit more severe than mine. I also have my heart valve checked regularly. I wanted to ask you, do you have metobolism issues? Mine is fast.....really fast, and the doctors can't figure it out. They say my thyroid is fine, checked for lots of cancers, and much more. Its weird.......
OddManOut13 6 months ago
@OddManOut13 I have been tested for this metabolism issue for two years now, nobody gets it. I was thinking there may be an EDS angle. In any event, I am glad you are making videos for people, I commend you! Take care Gabby!
OddManOut13 6 months ago
Haha remember at school where we played this game called craven and you bent each others fingers back until it hurts, i was the champ due to my eds lol!!!
Natureboywhooo 7 months ago
lol I can do all that and twist my wrist all the way around but the more you do it later it will hurt verryyyy badly like right now my right hip is just OMG and now it's radiating down my leg I go to a pain doctor now cause yeah they can't do anything for you like they could for others but my pain doc quit maybe cause he was old I don't know lol but this new pain doc says oh yeah it's your sciatic nerve I can burn it very young knows nothing of ehlers take it easy on the popping joints trust me
sacredcircle602 8 months ago
Hi-- Are you sure you have hypermobile type? Usually the skin laxity and some of the other symptoms you mentioned are classical type (old type I-II). Just hoping you've got the correct subtype from a geneticist since it can affect treatment and precautions along with preventing problems. They're so much more detailed and specialized than other docs in making the correct type of diagnosis. I've got classical type-- so I know it too well. Wishing you all the best!!! Thx for sharing w/all!
mobiusfly 9 months ago
Comment removed
mobiusfly 9 months ago
oh, how does it mess with the heart???
potsinfo 9 months ago
It sux when all of your friends are in gym class playing and when you finally make a home run in kickball, your legs go all woohoo and your knees and ankles go pop. Then you are sent downward to a dislocated shoulder and wrist on the asphalt. Let's not forget popping fingers! Yeah, I can totally relate to you, but it's kinda nice to know that there are other teens out there with EDS :3
UchihaRandomness 9 months ago
my doctor diagnosed me with benign hypermobility syndrome, she suspects EDS, but i don't have as many of the symptoms as you...so I dunno...
mechaXlex 9 months ago
I feel your pain...I am hypermobile and in pain constantly. Thanks for sharing! And the push-up thing, oh god I can relate :)
jennadrums 9 months ago
I am sure that I got it, stretchy skin, can do weird things with limbs, but I go pump iron take sun and all that stuff. I can take my legs behind my head, I was pretty weak when i was little, but I did karate for 2 years, swam for 3 years, and now I am as strong as normal people.
banqbanqbanq 10 months ago
are the joints on your spine strong? you seem to have good posture etc. my spine sublaxes easily but apparently i don't have eds when the doctors tested.
Timb0NZ 11 months ago
@200laura002Also if you love something i believe that just because of this you should stop. so i wake up sore, bruised, swollen, or in one case dislocated. but the pain of not doing the martial arts is nothing compared to the pain of my condition. But like i said before it depends on you, but trust me dont stop being active because of it, it'll only make it worse keeping supple and strong will always help, and my muscle bulk now acts as a sort of padding ;)
beowulfbowsie 11 months ago
You described it exactly how I do whenever I describe it to people. Even down to the push up thing.
SuperILY123 1 year ago
Hi gabby. My daughter and I just watched yr video. She is 17 and has EDS type 3 too. All the same symptoms as you. It makes her feel less alone with all that she goes through to be able to watch things like that. Thankyou (and you are georgous)
sammilou1000 1 year ago
I have EDS So do my 4 kids, its a crazy disease that many people dont understand
brthlss1 1 year ago
hooot
forciie 1 year ago
can you stretch your skin rlly far? i heard thats a type of eds.
HockeyFan7374 1 year ago
I Have EDS to.
annemarijemuis 1 year ago
I have EDS classical, hyper mobile, and vascular. Feel your pain, gorgeous.
If anyone see's this and has EDS and lives in Australia contact me. I know no one else here.
aschezuash 1 year ago
@aschezuash . Hi my daughter is in Victoria and has EDS. She is 17
sammilou1000 1 year ago
'I can do that with my joints and I have stretchy skin like that. Only I have no joint pain and I have only been injured twice in my life. Although my ankle pops out of joint all the time. I know I don't have this disease but my joints are extra flexible.
guitarobsessed85 1 year ago
I just found out this week that I have HEDS. I was very in to sports when I was little but I kept hurting myself and now I know why. I was playing basketball for high school and I kept hurting my ankles. I went to the junior varsity team after my freshman year and the first practice my ankle just gave out and I couldn't even walk for 3 days. I was on cruches for almost a month. I also developed GI problems. I missed my Senior year of High School because I was so sick.
Wolverineeeeeeee 1 year ago
I have EDS as well, actually it is kind of rare. Some people get diagnosed EDS just by seeing a doctor but I got diagnosed by a skip biopt. EDS is a gene problem. And when you have it. your father or mother has it too. ass well your children will have a 50% chance themselves. Just wanted to say that.
Tinkwashere 1 year ago
My daughter is 3 years old and still unable to walk, the doctors seem to think she also has type 3 EDS and I was curious if this effected you when you were a a toddler, did you have mobility issues?
Like my daughter tries to walk, however she is super stumbly if that makes sense, she stumbles from one place to another...
rklhughes 1 year ago
@rklhughes When I was a toddler I could walk, i just stumbled a whole lot. It seems the taller i got the more i would fall. When i was 3 i broke my elbow by simply loosing my balence on a playground. I was heavier as a child so when i fell it tended to hurt more, now I am thin so it doesnt hurt as much when i fall but i fall a lot more frequently.
gabbynotgorgeous 1 year ago
@rklhughes I have eds and was unable didnt walk till i was nearly 4. after that my parents found it very hard to get me to walk anywhere. I didnt get diagnosed til i was 27 even though i had symptoms and obvious signs my whole life and as a result im very affected by eds now. If you suspect your daughter has eds or is having any development delay along with pain then definatly push to get her seen by a dr who knows eds.
karmawheels 1 year ago
@rklhughes when i was a baby my legs were put into casts to try to hold them together. that was a long time and a lot of knowledge ago, but although i have been unable to walk more than a few times in my life, with braces, physical therapy and whatever else good doctors had to offer at the time i got it back. eventually, it'll get worse and there won't be a whole lot you can do, but at 3 years old the possibilities are endless. my 4 year old has it and can now write his name! sometimes.
Bevin313 9 months ago
Thanks for making the video. I have EDS Hypermobility. The geneticist who diagnosed me told me that this is one of the most common genetic issues that she sees. So it is more common than 1 in 10,000. She said it is "in the hundreds". And there are studies from Iraq and Nigeria where 34% and 43% of those populations have EDS respectively. So almost a majority of people.
EDSguy1 1 year ago
@EDSguy1 yeah, it seems that people never really put EDS in consideration when they have a lot of problems with their joints. the numbers are increasing because EDS is becoming more mainstream and their symptoms seem to match. my moms friend had all the symptoms i had, and when she was a kid she was just clumsy. so i think more people are becoming more aware.
gabbynotgorgeous 1 year ago
Fellow EDS'er here. I was diagnosed around 20. However I had always been told by physio's and doctors and was treated for hypermobile joints. My main areas of issue is scarring, my hands, jaw and my hips dislocate when I sleep on them.
I used to be able to get my legs behind my head but I have stopped due to a spinal injury , I still can but the pain is too bad.
kirafaye 1 year ago
you are a beautiful girl !!!! ; ) estas muy hermosa !! picos desde colombia !!
masvoley 1 year ago
This has been flagged as spam show
I have the same thing. I have CEDS and Hypermobility.
I am looking for others in the USA with the disorder. I was just recently diagnosed. I started a blog, I might want to use some of your videos with your permission. It talks about how I cope and it puts a light heart on a tough way to live...
edsshegetitfromhermomma.blogspot.com
Shegetitfromhermomma 1 year ago
I thought I had EDS but really I was just really flexible lol but this look like a painful and really dangerous syndrome
CyrillKR 1 year ago
Can you play any sports with these conditions?
200laura002 1 year ago
@200laura002 I'm not really supposed to.
but I am on a competitive cheerleading team which probably is not good.
they also say swimming is good for the joint problems and things
gabbynotgorgeous 1 year ago
@gabbynotgorgeous be careful with the swimming. I am 13, and I was diagnosed after extreme pain while swimming because I was popping shoulders and hips. And they also took me out of P.E./ school sports.....
zachsta18 1 year ago
i have EDS, and the doctors discovered it after i dislocated my shoulder swimming....so i agree
brenka17 1 year ago
@200laura002 your not suppose to, I mean if the doctors had there way I would never move lol but that is also because I didnt know until I was 18-19 and I was an elite athlete which excelerated my joint destruction they say most likely due to everything I will be in a wheelchair by the time I am 30, so sports especially if its a more severe case of eds are not advised
skaty825 1 year ago
Comment removed
beowulfbowsie 11 months ago
@200laura002 @200laura002 it totally depends on you. I have the Tenascin X deficiency type, but before i was diagnosed two years ago in Sheffield (im a 17 year old Brit) i totally loved martial arts, and i was fairly good at cage fighting/mixed martial arts ive done Judo, Taek Kwon Do, BJJ, Kickboxing, and now Kung Fu. My doctor thought i was an idiot to begin with, but Ive noticed the more i did it the better i felt. My pain barrier grew, and i built muscle so im now 13.5 stone.
beowulfbowsie 11 months ago
This has been flagged as spam show
@200laura002 it totally depends on you. I have the Tenascin X deficiency type, but before i was diagnosed two years ago in Sheffield (im a 17 year old Brit) i totally loved martial arts, and i was fairly good at cage fighting/mixed martial arts ive done Judo, Taek Kwon Do, BJJ, Kickboxing, and now Kung Fu. My doctor thought i was an idiot to begin with, but Ive noticed the more i did it the better i felt. My pain barrier grew, and i built muscle so im now 13.5 stone.
beowulfbowsie 11 months ago
Gabby SOOOOO gorgeous, Iam an EDSer as well, I greatly admire your attempt and success at educating others about EDS and its core issues!!! You are a very bright and brave young woman!!! Keep your chin up;cures are not so far away!
Have a great day!
friends,
Cristina
pserra 1 year ago
Gabby SOOOOO gorgeous, Iam an EDSer as well, I greatly admire your attempt and success at educating others about EDS and its core issues!!! You are a very bright and brave young woman!!! Keep your chin up;cures are not so far away!
Have a great day!
friends,
Cristina
pserra 1 year ago
I also got diagnosed with EDS when I was 15..
15 right now, hard to deal with it. ):
loveee
capjanie 1 year ago
Try Pilates for stabilizing your joints. Start slow with very small movements and build up strength. Among many other joints, I can subluxate my shoulders on purpose or reaching for something a little to far away. I've been able to strengthen my shoulders and even been able to strengthen my arches so my feet aren't in pain as much. My feet were never completely flat, but were headed that way. I have to be consistant with the exercises or I'm back in more pain in a few days.
searchingforstable 1 year ago
i was just studying this...your's is 1 in 100,000. You lucky... Ur really beautiful anyway
Ttubovoros 1 year ago
I have EDS hypermobility type aswell. I was diagnosed just this year but have had it my entire life. I was wondering if you have fibromyalgia or scholeosis aswell? Also, do you have to take extra vitamins daily? I am fairly new to the disease and am looking for people who have it so for communication about the disease.
I hope you are doing well and without pain today. :)
angellicinnocence 1 year ago
@angellicinnocence I do have scholeosis, no fibromyalgia from what I know of. I just got properly diagnosed, which was quite a heavy thing to handle at 15. I have really not started to do anything special since being diagnosed. I really should start doing that. I am without pain for the most part today thanks for asking =] and same to you. If you want to know anything else message me and I'll be happy to answer
gabbynotgorgeous 1 year ago
@gabbynotgorgeous i have fibromyalgia and eds. it is progressive as a disorder and gets worst as you get older. you should not do "tricks" as it can progressively worsen your condition as well.
violetcatalyst 1 year ago
I am at stage 3 and it sux.
NinjastormVII 1 year ago
Well I think she's cute :-)
WunderRiot 1 year ago
Hey kool vid
i have eds aswell, type 3 aswell
RacingDollACR646 2 years ago
Hy Im from Romania from the Transylvania part and I have EDS but until the 90's not even in Hungary they didnt knew what I had. I have the level 2 type. Im 22 y old. Many times I feel exousted and sometimes i feel the pains. but u have to realize that everyone has problems, its just another thing to live with. smile a lot, search happiness! and everything will be OK. Good that u uploaded ur video!
webmesterweb 2 years ago
yeah, well the childrens hospital told me to do it just as a precausion, because im young and my heart looks healthy now, but that may not be the case in a few years
gabbynotgorgeous 2 years ago
Well described.
You have your heart checked out every year?
I was diagnosed with EDS3 in Feb 09 and they never said anything to me about the heart.
Athranantillus 2 years ago
I Was Wondering If you Could Help Me , I Think I Have This Syndrome cause i get very painful joints and i can bend my arm back farther than yours actually. if you could message me it'd be great (:
dgkricco1 2 years ago
same thing. could you watch my "robyn's got talent" video, another user on youtube said by watching the video, he thinks I may have EDS, and I started to wonder too. I thought I was just naturally flexible, but sometimes my joints hurt, like my knees, and sometimes my leg muscles & my ankle hurts. But sometimes, it's elsewhere in my joints.
Insaneymaney 2 years ago
I don't have EDS, but it sounds like it sucks. by the way, not to seem creepy, but you're really pretty.
101internationalist 2 years ago
its tough shit, I have it, too. You seem real nervous in this video! don't be so nervous.
mamaismcbusy 2 years ago
Hang in there i have the same type as you and i know its hard ,,,,
SICKLYFLORIDAGIRL 2 years ago
glad to see you made a video :)
BuddyBoy091994 2 years ago
I'm a comedian with classical EDS. Hang in there, if you ever need a laugh let me know and i'll send one your way.
Dustin
DustinWoodComedy 2 years ago