Blood test were always normal with the exception of a few thing always off (but I dont know what these things mean). Anyway, I decided to check up on what it was today, and found I have almost every single symptom. From "Thin skin", to hypermobility, to flat feet, difficulty healing from surgery, etc. One thing I am wondering.... every video I have seen of someone with EDS is very thin (as am I. I am 5'3" and 102lbs). Is that a symptom, too?
I was reading my medical files last night and was shocked to see that 3 different times in the course of a couple years, it was mentioned in the report that they think I may have Ehlers-Danlos. I too, ahve gone to the doctor many, many times, and no one ever knew what was wrong. I was worried they thought I was neurotic, but it turns out they thought there was something going on, but failed to ever mention it to me or do appropriate testing.
Hello!!! My name is Betsy i speak a little english im from Puerto Rico and now bllive in Orlando Florida, i have Ehler Danlos was diagnosed when i was 5 years,i have 33 years and have 3 Kids, was looking for support group, i would like to know more about this condition talk to people etc....i whent to geneticist , but not could i be tested to detrmined which type i have...watching your videos i saw what happens to you just like me in some things.. sorry for my writing..Thanks ..God es you!!!
Hello!!! My name is Betsy i speak a little english im from Puerto Rico and now live in Orlando Florida, i have Ehler Danlos was diagnosed when i was 5 years,i have 33 years and have 3 Kids, was looking for support group, i would like to know more about this condition talk to people etc....i whent to geneticist , but not could i be tested to detrmined which type i have...watching your videos i saw what happens to you just like me in some things.. sorry for my writing..Thanks ..God bles you!!!
Hi Rockerchik! VERY happy for you not to have type 4! I hope you get better. Were you diagnosed by skin biopsy or blood test? Is there a blood test now?
Recently my pain doc (who I love!!!) discovered that my back and hip pain could be from a torn labrum in my hip and sent me for an MRA. He was right. Now I need surgery. I think I need a hospital and doc that is very familiar with both EDS and hip. I had a first consult 2 days ago.
Both of my adult daughters have EDS III as well. That's good that you are speaking with doctors for awareness. You're doing a fantastic job.
As far as your pain, in past, some things that helped was acupuncture, tens unit, very light exercise to built muscle around the joint to help support. This needs to be with a PT that understand EDS or they can hurt you, massage therapy. Those are just a few items that helped in our experience. Best of luck.
I just met someone tonight who has this....I really feel for you....your incredible person to be able to fight this...I have the upmost respect for you. Thanks for your example of courage and determination.....
I had never heard of EDS until last night on "Intervention". All I can say is-WOW. I think you're doing a great job bringing awareness off it to an entire world. You definately helped me understand exactly what it is-the reading just wasn't doing it :) Stay strong and keep hope. Prayers are going out to you!
Thank you, now i don't feel so alone. . .I'm only 14 so it is hard! A little bit longer. . .and i'll be fine! I give you my best wishes, and be careful, even the slightest of things can hurt. I go through a lot of pain myself...Anyways thank you!
I am at the end of my rope after 20 years of suffering... i don't have health care and can't afford to go to a geneticist... the pain is killing me. I know I have the hypermobility type of Ehler's Danlos. Please let me know if you have any information about the doctor that you saw, so that maybe I can get help for this. Thank you.
I was born with type VI EDS. This is one of the rare types. I have severe scoliosis due to the EDS. I have went through countless hospital stays and operations due to my spine and artery ruptures.
Its good that you make these videos and in a sense, some what essential! What I mean is, there could be other people! As you say there are many with this, but people who have not yet had there problem diagnosed. They could see your videos and have some kind of explanation to there symptoms. Plus you let all your peeps know that your not letting it win and that to me makes you a Hero.
i would love to talk to you, my son was recently diagnosed with ehlers danlose.....he is having a very hard time processing this diagnosis. he is 15. we are in indiana so i was hoping for your insight on the testing you had done in michigan to diagnose the type. we were told that he had 2 or3 because there was no test??? would you please write me?
Great video, i think you should let other know about this. This is the first time i heard of this, sounds painful. Hope you get better keep making videos.
Hi, Glad to hear that you don't have Vascular EDS. I live in the Uk and myself and my partner have EDS Type 3. I am also determined to raise awareness of EDS/HMS. Would be great to keep in touch. Cara xx
Again there are no words that can describe how I feel after watching your videos. I still say you're amazingly beautiful, strong, and a great inspiration for other people. If you keep this up you'll easily become a net celebrity, and someone that people look up to, and respect. I know you've already got the respect from me, and i dearly hope others see why this is so important.
You know what...that is also a mistery to me. Every time Im making a new video for youtube I try to strategically place what I want as a video still/picture of my video, in the beggining, middle and end. I always miss....lol. Youtube picks whatever they feel like it for a still, I suppose. Unless there is a trick we dont know about...lol.
wow,, you are a very special strong person.. i.m not going to say that i know your pain, but i have been under a lot of pain too, but it amaze me how strong you are
Be strong Tracie, you're in Kaylz & My thoughts every single day!
**Message to the people who think its fun to have a go at disabled people, Tracie has been through so much with this illness, its not fum being disabled, I am disabled myself but my condition is no where near as serious as Tracies, It would be good if you could just try and go through 1 day of what we have to, then your opinions might be different!!
Wow... what a sad existence you must lead, to have only THAT to say about what you just watched and heard. I do not envy you one bit.
The next time you hear someone being honest about what's going on in their life to help other people out, I hope that you'll be more constructive with your comments, because she deserves a hell of a lot better than that, buddy.
She is beautiful yes, but I think you should show a bit more respect considering what this video is about. Just because it's youtube doesn't mean you have to spout some smartass or derogatory comment on every video you see.
@Zorlac0666 I think it's wrong that her husband forced her to have sex right up to the end, even though every time she would partake she would end up dislocating her arm or leg. Especially in it was doogie-style--his favourite position according to Tracie. Tracie would have to endure and hope not to dislocate which was hard to avoid.
However the worst position for her was when he made her ride him. She often cried as she had to bounce up and down on him dislocating both legs as a result. It took days or her to recover. Her husband loved her on top, so tracie claimed. RIP Tracie.
Blood test were always normal with the exception of a few thing always off (but I dont know what these things mean). Anyway, I decided to check up on what it was today, and found I have almost every single symptom. From "Thin skin", to hypermobility, to flat feet, difficulty healing from surgery, etc. One thing I am wondering.... every video I have seen of someone with EDS is very thin (as am I. I am 5'3" and 102lbs). Is that a symptom, too?
mistimt1029 6 months ago
I was reading my medical files last night and was shocked to see that 3 different times in the course of a couple years, it was mentioned in the report that they think I may have Ehlers-Danlos. I too, ahve gone to the doctor many, many times, and no one ever knew what was wrong. I was worried they thought I was neurotic, but it turns out they thought there was something going on, but failed to ever mention it to me or do appropriate testing.
mistimt1029 6 months ago
My spine cracks when i breath cause its caused me to have postural scoliosis!
Natureboywhooo 8 months ago
your so pretty
JAZZ22794 11 months ago
@JAZZ22794 Plus she eats cum to make up for the fact she can't cook a meal or wash her own ass.
danthehempsmog 1 month ago
Hello!!! My name is Betsy i speak a little english im from Puerto Rico and now bllive in Orlando Florida, i have Ehler Danlos was diagnosed when i was 5 years,i have 33 years and have 3 Kids, was looking for support group, i would like to know more about this condition talk to people etc....i whent to geneticist , but not could i be tested to detrmined which type i have...watching your videos i saw what happens to you just like me in some things.. sorry for my writing..Thanks ..God es you!!!
aGodisgood7z 1 year ago
Hello!!! My name is Betsy i speak a little english im from Puerto Rico and now live in Orlando Florida, i have Ehler Danlos was diagnosed when i was 5 years,i have 33 years and have 3 Kids, was looking for support group, i would like to know more about this condition talk to people etc....i whent to geneticist , but not could i be tested to detrmined which type i have...watching your videos i saw what happens to you just like me in some things.. sorry for my writing..Thanks ..God bles you!!!
aGodisgood7z 1 year ago
Hi Rockerchik! VERY happy for you not to have type 4! I hope you get better. Were you diagnosed by skin biopsy or blood test? Is there a blood test now?
Recently my pain doc (who I love!!!) discovered that my back and hip pain could be from a torn labrum in my hip and sent me for an MRA. He was right. Now I need surgery. I think I need a hospital and doc that is very familiar with both EDS and hip. I had a first consult 2 days ago.
Help please from anyone reading this.
theonlysuz 1 year ago
Both of my adult daughters have EDS III as well. That's good that you are speaking with doctors for awareness. You're doing a fantastic job.
As far as your pain, in past, some things that helped was acupuncture, tens unit, very light exercise to built muscle around the joint to help support. This needs to be with a PT that understand EDS or they can hurt you, massage therapy. Those are just a few items that helped in our experience. Best of luck.
salsart1 1 year ago
I just met someone tonight who has this....I really feel for you....your incredible person to be able to fight this...I have the upmost respect for you. Thanks for your example of courage and determination.....
bannanapancake 2 years ago
I had never heard of EDS until last night on "Intervention". All I can say is-WOW. I think you're doing a great job bringing awareness off it to an entire world. You definately helped me understand exactly what it is-the reading just wasn't doing it :) Stay strong and keep hope. Prayers are going out to you!
sweetz863 2 years ago
Thank you, now i don't feel so alone. . .I'm only 14 so it is hard! A little bit longer. . .and i'll be fine! I give you my best wishes, and be careful, even the slightest of things can hurt. I go through a lot of pain myself...Anyways thank you!
aLittleBitLonger0095 2 years ago
God Bless You ! i hope your well
TheBadPizza 2 years ago
I am at the end of my rope after 20 years of suffering... i don't have health care and can't afford to go to a geneticist... the pain is killing me. I know I have the hypermobility type of Ehler's Danlos. Please let me know if you have any information about the doctor that you saw, so that maybe I can get help for this. Thank you.
deborahATX 2 years ago
Best wishes to you and may God Bless...
bosbal 2 years ago
I was born with type VI EDS. This is one of the rare types. I have severe scoliosis due to the EDS. I have went through countless hospital stays and operations due to my spine and artery ruptures.
parrotlady2006 2 years ago
I have one of the VERY rare types, type VI.
parrotlady2006 2 years ago
i completely agree with Bookster & Zorlac.....
beautiful, yes. but that would be the least important aspect of this video, obviously. boddyxpolitic...smarten up.
and rockerchik76... hang in there.
much respect & best wishes!
Deano366 2 years ago
Who do you see for treatment if you don't mind me asking?
Darkravin882 2 years ago
I was diagnosed with EDS 3 at UofM also. They were great!
Darkravin882 2 years ago
ur so beautiful and strong! Hold on hun, it will get better one day i promess
PastryPanic0506 2 years ago
You are a strong young lady. Keep your head up.
dudaintright 2 years ago
ty for making this video for u see i have Ehlors Danlos Synd. I was born with it. This shows me im not the only 1 out there with it. So ty.
JustsAngel 2 years ago
I'm hypnotized by those amazing eyes. So beautiful.
jasonhausmann 2 years ago
You're a very beautiful girl ^^" be brave and be strong!! I favorited all ur videos ^^'
TheDarkFallenAngel20 2 years ago
Your a very beautiful young lady god bless you
MrsUpTownGirl 2 years ago
Keep Fightin on Babe You Rock!
Pinchysandcrab 2 years ago
i have the same type 3
hang in there
smileox33 2 years ago
Wish you the best. Hang in there.
couchpotatotheatre 2 years ago
Its good that you make these videos and in a sense, some what essential! What I mean is, there could be other people! As you say there are many with this, but people who have not yet had there problem diagnosed. They could see your videos and have some kind of explanation to there symptoms. Plus you let all your peeps know that your not letting it win and that to me makes you a Hero.
All my love,
Dandy...
ADandylion007 2 years ago 2
God bless you, beautiful.
phrydoom 2 years ago
your a strong sweet young lady.
NickelbackIsSexy 2 years ago
U look like the sister of avril lavigne
zxcts 2 years ago
Holy, you are right, she does look like avril lavigne. MEOW
phrydoom 2 years ago
Hope you feel better.
- Paul Seveng
7seveng7 2 years ago
keep fightin! just remember, if you ever need help, im there for u! <3
21freeskier21 2 years ago
This is soooooo touching my Dear!!!
If You listen to it closely it is soooo touching!!!
Thanks for showing what a strong woman you are
5***** Hope we can be friends
Arienfeuergeist 2 years ago
wish u all the best to! Keep on fightin! I had cancer in my foot, had 3 operations, but now it's ok! Take care, *hug*
DerZween 2 years ago 2
I wish you all the best and hope despite things you live a happy and full life everyday.. rock on!!!
lwfstars 2 years ago
Best of Luck !!!!!!!!
gokartjoe 2 years ago
Hi Rockchic,
I also have EDS3 or HEDS. I have made a video about my fingersplints. I hope maybe it can help you.
cLundqvist 2 years ago
i would love to talk to you, my son was recently diagnosed with ehlers danlose.....he is having a very hard time processing this diagnosis. he is 15. we are in indiana so i was hoping for your insight on the testing you had done in michigan to diagnose the type. we were told that he had 2 or3 because there was no test??? would you please write me?
stilesmarsha 2 years ago
there is an EDS clinic at Cincinnati Children's hospital that is wonderful - you may want to contact them.
Lessa3102 2 years ago
Great video, i think you should let other know about this. This is the first time i heard of this, sounds painful. Hope you get better keep making videos.
75opp7 2 years ago
sorry about the asshole sweetheart...some people don't understand decency:)
bubbaclem24 2 years ago
I will keep you in my hopes and prayers. You are very courageous!
Pinchysandcrab 2 years ago
Hi, Glad to hear that you don't have Vascular EDS. I live in the Uk and myself and my partner have EDS Type 3. I am also determined to raise awareness of EDS/HMS. Would be great to keep in touch. Cara xx
acaciacara 2 years ago
Oh boy,i feel for you. :(
CreateCreateYours 2 years ago
Again...thankyou!!! and hope is a wonderful thing, my love to you, Bruce..:))
mav3r1ck69 2 years ago
i think that you are a beautiful and strong woman. I pray that you are pain free and can have more days of sunshine then rain.
~Christian
wildflower96 2 years ago
'bout time you had a glimmer of hope. :)
thanx for the update
DakotaPunk 2 years ago
great vid hunny i dont have what u have but i live with severe asthma and i just take it day by day you are a very strong women.
ricky305y 2 years ago
Again there are no words that can describe how I feel after watching your videos. I still say you're amazingly beautiful, strong, and a great inspiration for other people. If you keep this up you'll easily become a net celebrity, and someone that people look up to, and respect. I know you've already got the respect from me, and i dearly hope others see why this is so important.
Zorlac0666 2 years ago
Glad to hear you don't have vascular!!! I'm sorry I havent been around much... I've been having a hard time myself!
DarkWaterfall 2 years ago
What an amazing woman. An inspiration to us all
Kirstiie xx
KirstiieKam 2 years ago
This is amazing! amazing ! AMAZING. You are fighting back for everything you got
You will win Desease = Lose
-East
Eastway69 2 years ago
you're strong..you are beautiful..and i thank you for your strength...you are amazing...i am here for you..always!
deviantwitch31 2 years ago
Glad to hear you got good news, Tracie. Keep on fighting. You are an extraordinary individual!
wideglide7777 2 years ago
Hugs (but a gentle one)
happymark1805 2 years ago
You know what...that is also a mistery to me. Every time Im making a new video for youtube I try to strategically place what I want as a video still/picture of my video, in the beggining, middle and end. I always miss....lol. Youtube picks whatever they feel like it for a still, I suppose. Unless there is a trick we dont know about...lol.
Have a nice evening. ;)
JOSYMOL 2 years ago
we love you!!!!!!!!!!
yichkox 2 years ago
wow your a very strong girl .your amazing tracie ! sending you all my love! your a very beautiful lady.
darkangelzgirl7 2 years ago
wow,, you are a very special strong person.. i.m not going to say that i know your pain, but i have been under a lot of pain too, but it amaze me how strong you are
yichkox 2 years ago
We're prayin for ya! Hang in there! Rock On!
fourty5mag 2 years ago
Be strong Tracie, you're in Kaylz & My thoughts every single day!
**Message to the people who think its fun to have a go at disabled people, Tracie has been through so much with this illness, its not fum being disabled, I am disabled myself but my condition is no where near as serious as Tracies, It would be good if you could just try and go through 1 day of what we have to, then your opinions might be different!!
Keep your chin up Tracie!
Love
David & Kaylz xx
musicman19651989 2 years ago 2
This comment has received too many negative votes show
u look hot..... rockermilf
boddyxpolitic 2 years ago
Wow... what a sad existence you must lead, to have only THAT to say about what you just watched and heard. I do not envy you one bit.
The next time you hear someone being honest about what's going on in their life to help other people out, I hope that you'll be more constructive with your comments, because she deserves a hell of a lot better than that, buddy.
~respect~
Bookster343 2 years ago 2
She is beautiful yes, but I think you should show a bit more respect considering what this video is about. Just because it's youtube doesn't mean you have to spout some smartass or derogatory comment on every video you see.
Zorlac0666 2 years ago 5
Comment removed
danthehempsmog 2 months ago
@Zorlac0666 I think it's wrong that her husband forced her to have sex right up to the end, even though every time she would partake she would end up dislocating her arm or leg. Especially in it was doogie-style--his favourite position according to Tracie. Tracie would have to endure and hope not to dislocate which was hard to avoid.
danthehempsmog 2 months ago
However the worst position for her was when he made her ride him. She often cried as she had to bounce up and down on him dislocating both legs as a result. It took days or her to recover. Her husband loved her on top, so tracie claimed. RIP Tracie.
danthehempsmog 2 months ago
@Zorlac0666 She now even suck a cack
MuslimBrezz 1 month ago