Why don't more doctors know about Ehler-Danlos Syndrome? I believe that a lot of people diagnosed with Fibromyalgia actually have EDS. There's no cure for Fibromyalgia either.
I have not been diagnosed with EDS. but for the past 6 years i have been going from doctor to doctor. I have been told i have one thing by first doctor and then something else by the second doctor. In 6 months one year i saw in total 13 different people. I now go to the Cleveland Clinic because they think its a heart problem, i don't think it is. The more I look into EDS, i believe i have this. I go back to CC in less than a week, I'm suggesting EDS. All i want is to know whats wrong with me!!
I dont get why they use the beighten scale im hypermobile but im not that flexible cause of years of lifting weights, but then you can get people who aint hypermobile who can do everything on the beighten scale i'e martial artists!
I suffer with EDS and this video is very helpful and informative. I have created a blog to help raise awareness about EDS and other invisible disabilities, educate others and also offer support and help to those that need it.
I have Ehlers-Danlos. And it's hard to explain to others that my joints pop out at random. My skin is stretchy, why I have scars from kindagarten [I'm 20], and everything else.
I'm going back to a specialist in October. They have yet to find what type I have. Some think I have alittle of all [Which Dr.s say is impossible. But I proved the impossible before, I could do it again.]
i've been in PT most of my life and it's only made things worse...the only thing that provides any relief is narcotics, which i'm getting very tolerant to since I've been on them since i was 17 and am now 25. i'm in so much pain all the time, i hope to god a cure is found soon.
Wow I was diagnosed with it when I was born. My mom pinched my and said...."yep she got it". It Is a lot of times genetic.... I thought it was genetic in till I saw some of these comments about people being diagnosed with when the were near their teens and twentys.
you can offer good pain management? really? because it took me a long time and quite a few doctors to find one who actually did his job. anyone in Missouri or Illinois who has EDS should try Dr. Gurpreet Padda. he is a truly good doctor. he didn't just do one test, say it's EDS and let it go. he did every test he could, made sure he knew EXACTLY what was going on and is now treating me appropriately.
@Misana EDSers are called zebras as they are medical anomalies. In med school docs are told when they hear hooves to think horses(common) not zebras(rare). Unfortunately, that means many doctors completely forget about the zebras(rare cases).
Got diagnosed May 10, 2010, it all makes sense now. I've dislocated my left shoulder four times in 5 years, and have 33 degrees of hypermobility in my arms.
My doctor back when I was 16 said I might have this. I'm now 18 and going in to get tested for it soon. I really hope I don't have it. But if I do now I don't feel so alone. I thought I was the only one who suffered these kinds of things. I get it all in my lower body, especially my knees and hips -_-
I guess I got lucky that my doctor knew about EDS, in case I do have it. Or I could have gone without an answer all my life.
i had to have spinal fusion done on my back because i formed spondylothesis, which i got from my EDS, although i have never really dislocated any bones i still feel 'clicky' at times, which is really annoying
Lol okay i thought you did. if you had it hypermobility would be the best. My cousin has that type and we all call him gumby :D idk what type i have yet. i dislocate and can fold up into a small box and its fun but EDS has screwed up my spine and my life man :(
i wish i had hypermobility i practice contortion though its fun i guess, lol gumby, cuz hes all yah.what does it feel like when you pop a joint, i want to but im afraid, hwo did you find out??
when i was younger i was always in pain. All the doctors said it was growing pain. Till one day I layed my head down on my pillow and started to scream, i dislocated my Jaw =/ it was locked shut. We ended up going to another doctor who had EDS and she diagnosed me with it. Sometimes it is extremly painful when you dislocate, sometimes you can't feel it at all. You can kinda feel the joint leaving the socket and rubbing around,
i'm getting tired fast and i don't have a good condetion...atleast that is what the doctors are saying, I have the best condetion off the hole class and i'm not getting tired fast.. but i still have EDS.
can sombody explain me why i don't feel tired or anything?
it could be that you have a very minor form of EDS. if you research it, you will find that there are different severities. for example, I might dislocate my shoulder every month or so, whereas my friend dislocates it every week, or every day. The same varies with how tired you may feel. Also, it seems to progress with puberty, so as you continue with that, you may start to notice more and more fatuige.
I really hope things turn out well for you, and that it's not too severe
i stumbled across this video today. I am 52 years old and lived in pain for at least 30 years. now it all makes sense. i was looking for collagen disorders because i have an unstable shoulder partial dislocation. i started mega dose ascorbic acid one week ago and to my amazement every joint is improving.
Great vid,My wife has eds.I agree we need more awarness.Need to mention things like chased from hospitals for drug seeking,Need govt.programs to help the ones that cant get out of bed,Insurance that will pay for meds because they dont,its not on their list,cant get social security cause she waited to long to file,gets s.s.i.600.00 a month if no one else works,Have to get divorced so i can work,went to family services for help.Told me to file fmla at work, got fired.losing our house,4 kids
I too have EDS as do my 5 children. No offense to EDNF however whoever is in charge of the Awareness/Marketing end of promoting EDS awareness is not good at it at all. I have been involved & aware of the EDNF since 2000 and the site is not user friendly, if you don't have the money for membership you as a sufferer can't access the boards to ask questions about your condition. Marketing EDS needs to be revamped with someone who knows how to get this condition Known NOW not 20 more yrs from NOW!
Why don't more doctors know about Ehler-Danlos Syndrome? I believe that a lot of people diagnosed with Fibromyalgia actually have EDS. There's no cure for Fibromyalgia either.
deb310red 4 days ago
@FMDArtery Great video, excellent job in public awareness to your rare disease, Ehlers-Danlos.
TheFMDSA 2 weeks ago
I have not been diagnosed with EDS. but for the past 6 years i have been going from doctor to doctor. I have been told i have one thing by first doctor and then something else by the second doctor. In 6 months one year i saw in total 13 different people. I now go to the Cleveland Clinic because they think its a heart problem, i don't think it is. The more I look into EDS, i believe i have this. I go back to CC in less than a week, I'm suggesting EDS. All i want is to know whats wrong with me!!
snayls 2 months ago
I dont get why they use the beighten scale im hypermobile but im not that flexible cause of years of lifting weights, but then you can get people who aint hypermobile who can do everything on the beighten scale i'e martial artists!
LucaBlightBadass 4 months ago
This has been flagged as spam show
I suffer with EDS and this video is very helpful and informative. I have created a blog to help raise awareness about EDS and other invisible disabilities, educate others and also offer support and help to those that need it.
hideandseekdisabilities.blogspot.com
abistaff 4 months ago
my family has EDS also!!
melanie122899 4 months ago
I have Ehlers-Danlos. And it's hard to explain to others that my joints pop out at random. My skin is stretchy, why I have scars from kindagarten [I'm 20], and everything else.
I'm going back to a specialist in October. They have yet to find what type I have. Some think I have alittle of all [Which Dr.s say is impossible. But I proved the impossible before, I could do it again.]
AshleyMariebjb 5 months ago 2
@AshleyMariebjb im in your same boat..and finally 2 days ago they just determined i have hypermobility...good luck!
lovefightsback22 1 month ago
i'm in love with his husband!
ZakaraAli 8 months ago
This has been flagged as spam show
I also have EDS, Type III! GO ZEBRAS!!
BloodGutsGoreLover 8 months ago
I also have EDS, Type III!!!!!
BloodGutsGoreLover 8 months ago
It would be nice to post Season 1 Episode 6, with Marissa Irwin who possibly has EDS and Chiari 1 Malformation on here too!
owsi170867 9 months ago
i've been in PT most of my life and it's only made things worse...the only thing that provides any relief is narcotics, which i'm getting very tolerant to since I've been on them since i was 17 and am now 25. i'm in so much pain all the time, i hope to god a cure is found soon.
jennadrums 9 months ago
Wow I was diagnosed with it when I was born. My mom pinched my and said...."yep she got it". It Is a lot of times genetic.... I thought it was genetic in till I saw some of these comments about people being diagnosed with when the were near their teens and twentys.
libbydeland 9 months ago
@libbydeland parents probably didnt know what it was to get children tested maybe
melanie122899 4 months ago
When I saw this on tv I had already figured out she had EDS way before the doctors had.
SuperILY123 10 months ago
you can offer good pain management? really? because it took me a long time and quite a few doctors to find one who actually did his job. anyone in Missouri or Illinois who has EDS should try Dr. Gurpreet Padda. he is a truly good doctor. he didn't just do one test, say it's EDS and let it go. he did every test he could, made sure he knew EXACTLY what was going on and is now treating me appropriately.
Bevin313 10 months ago
Does anyone know who EDSPatient is....If you do please email me at EDSNetwork@wi.rr.com
1ehlersdanlos 10 months ago
I got this lol :p
banqbanqbanq 10 months ago
I HAVE EDS! <3
naquagesicnoon 1 year ago 2
Hey!!! my last name is Ehler!!!
Horsecrazy1324 1 year ago
I have EDS too! Go zebras!
MissMochibon 1 year ago 8
@MissMochibon zebras? I have it too. I'm wondering if I understood your comment though...skin?
Misana 3 months ago
@Misana EDSers are called zebras as they are medical anomalies. In med school docs are told when they hear hooves to think horses(common) not zebras(rare). Unfortunately, that means many doctors completely forget about the zebras(rare cases).
MissMochibon 3 months ago
@MissMochibon gotcha. Thanks.
Misana 3 months ago
Right now there's an opportunity to help fund research to develop better treatments for EDS through Chase Community Giving.
Instructions:
Log into or join Facebook, look up Chase Community Giving, find the EDS Today charity and do the following:
(1) Click on Green "Get Started to vote"
(2) "Allow" Access
(3) Click on "Like" for Chase
(4) Finally click on "Vote Now" (Green)
(5) Copy this and paste it on your status(optional)
Voting ends on the 13th of July, 2010! PLEASE VOTE to help EDS!
vegandanielle 1 year ago
Got diagnosed May 10, 2010, it all makes sense now. I've dislocated my left shoulder four times in 5 years, and have 33 degrees of hypermobility in my arms.
tooth50 1 year ago
I have HMS EDS and 6 yrs ago my heart started to give me trouble, Wolf parkingson white
Jellybubbleso0 1 year ago
My doctor back when I was 16 said I might have this. I'm now 18 and going in to get tested for it soon. I really hope I don't have it. But if I do now I don't feel so alone. I thought I was the only one who suffered these kinds of things. I get it all in my lower body, especially my knees and hips -_-
I guess I got lucky that my doctor knew about EDS, in case I do have it. Or I could have gone without an answer all my life.
EvangeliumDiSilenti 1 year ago
EHLER DANLOOOOOSSS
dobledosis1 2 years ago
i had to have spinal fusion done on my back because i formed spondylothesis, which i got from my EDS, although i have never really dislocated any bones i still feel 'clicky' at times, which is really annoying
misszLouise 2 years ago
@misszLouise what type do you have?
MsLala4ever 1 year ago
Me and my sister both have Elhers Danlos syndrome
Vascular. My sister has had two different surgery's. And my father died from it.
wingsofbeauty09 2 years ago
ugh i hate you EDS...they are testing to see what type it is, lets pray its not vascular..
rougekty 2 years ago
whats vascular you eman theres diffrent kind?? i always wanted it
kaelinjohns 2 years ago
why would you want vascular??? it can kill you!
rougekty 2 years ago
wich is that no , i just thought it woudl be cool that i can contort my body and be stretchy,really i didn't know, YIKES
kaelinjohns 2 years ago
Lol okay i thought you did. if you had it hypermobility would be the best. My cousin has that type and we all call him gumby :D idk what type i have yet. i dislocate and can fold up into a small box and its fun but EDS has screwed up my spine and my life man :(
rougekty 2 years ago
i wish i had hypermobility i practice contortion though its fun i guess, lol gumby, cuz hes all yah.what does it feel like when you pop a joint, i want to but im afraid, hwo did you find out??
ahh that sucks, hope you be well
kaelinjohns 2 years ago
when i was younger i was always in pain. All the doctors said it was growing pain. Till one day I layed my head down on my pillow and started to scream, i dislocated my Jaw =/ it was locked shut. We ended up going to another doctor who had EDS and she diagnosed me with it. Sometimes it is extremly painful when you dislocate, sometimes you can't feel it at all. You can kinda feel the joint leaving the socket and rubbing around,
rougekty 2 years ago
I'm 13 and i have EDS to.
i'm getting tired fast and i don't have a good condetion...atleast that is what the doctors are saying, I have the best condetion off the hole class and i'm not getting tired fast.. but i still have EDS.
can sombody explain me why i don't feel tired or anything?
Mexxi0 2 years ago
it could be that you have a very minor form of EDS. if you research it, you will find that there are different severities. for example, I might dislocate my shoulder every month or so, whereas my friend dislocates it every week, or every day. The same varies with how tired you may feel. Also, it seems to progress with puberty, so as you continue with that, you may start to notice more and more fatuige.
I really hope things turn out well for you, and that it's not too severe
--LSX
lightsaberxing 2 years ago
Comment removed
drooooopy 2 years ago
i stumbled across this video today. I am 52 years old and lived in pain for at least 30 years. now it all makes sense. i was looking for collagen disorders because i have an unstable shoulder partial dislocation. i started mega dose ascorbic acid one week ago and to my amazement every joint is improving.
datzfast 2 years ago 2
i have EDS too ...
sn1pzor 2 years ago
Great vid,My wife has eds.I agree we need more awarness.Need to mention things like chased from hospitals for drug seeking,Need govt.programs to help the ones that cant get out of bed,Insurance that will pay for meds because they dont,its not on their list,cant get social security cause she waited to long to file,gets s.s.i.600.00 a month if no one else works,Have to get divorced so i can work,went to family services for help.Told me to file fmla at work, got fired.losing our house,4 kids
semiLivedj 3 years ago 2
I too have EDS as do my 5 children. No offense to EDNF however whoever is in charge of the Awareness/Marketing end of promoting EDS awareness is not good at it at all. I have been involved & aware of the EDNF since 2000 and the site is not user friendly, if you don't have the money for membership you as a sufferer can't access the boards to ask questions about your condition. Marketing EDS needs to be revamped with someone who knows how to get this condition Known NOW not 20 more yrs from NOW!
rprimeau95 2 years ago
yeah i have EDS.
hahadillonsface66 3 years ago