Why exactly is walking difficult for you? For me, it was horrible sciatic pain that i just thought was associated with ED...was always on crutches. But after many many MRIs it was found I also have ankylosing spondylitis, which can be related to hypermobility. I was put on Enbrel injections that have helped SO much with walking and now after years of not being able to walk I now can. I'm still in pain and limp, but I am so much better.
When I searched for Ehlers Danlos on youtube I figured I would get no good results. This is exactly what I wanted, someone who understands and is going through it as well. I'm watching all your videos, you have no idea how much you are helping people, thank you so much!
If you ever need to talk. And wanted to know what you thought about me saying anything to my dr. About the disease. How is it diagnosed? Blood work? Thanks.
I first want to say your in my Prayers. Your a very strong person.
I was told I have Fybromyalgia about 10 yrs. Ago, then I got severe arthritis in both feet at the same time, they have never seen that, my feet are turning outward, I have arthritis in both knees, I also have nerve damage in both feet & lower legs, which they don't know why, all this started when I was about 30, I'm 42. I haven't been able to drive in 8 yrs. Have to walk with a cane, sometimes my hips hurt so bad , it feels like
my son and i were just diagnosed yesterday with EDS hypermobility ...i havent seen my mom for 20yrs but i hear she has arthritis really bad and my grandma was in a wheelchair because of it..my mom also has had some heart problems .i didnt even know what EDS was until yesterday..we are waiting for my son to go in for a echocardiogram..anyways , i was looking to learn more about EDS..thank you for sharing your videos..
my son and i were just diagnosed yesterday with EDS hypermobility ...i havent seen my mom for 20yrs but i hear she has arthritis really bad and my grandma was in a wheelchair because of it..my mom also has had some heart problems .i didnt even know what EDS was until yesterday..we are waiting for my son to go in for a echocardiogram..anyways , i was looking to learn more about EDS..thank you for sharing your videos..
I know someone that was recently diagnosed with this..my prayers and thoughts are with all of you who have eds. Please try to stay positive...You are a beautiful young lady...and thanks for educating us.
You actually kind of look like me, and I can't believe you're 32. You look so young. I don't know if I have the disease yet, but I am getting tested because I have a lot of the symptoms. I have a lot of problems with my feet, legs, and back.
We are only as strong as we can be, dont ever be to hard on your self or whom is around you. I to have EDS type 3 dose my sister who is a twin and as dose my mother my mum found out what she had it was to late for her and me well they new when i was to but was not completly sure till i was 8 i love my life all even i know it is hard but we all have a genetic problem even if it dose not show we just have to be strong im sorry you did not find out earlyer TC GOD BLESS X :)
Curious - have you ever tied acupuncture to help with the pain? I have a mild case of EDS, a family member has a severe case, and they are considering acupuncture....by the way - love your videos and postings!
I just wanted to tell you that I will be praying for you. I know its hard but your mind is strong and your strengh to overcome what life brings you is there. My son who is 12yrs. lost his father 2 yrs ago to eds and my son was just diagnosed with eds type 4 a few days ago. Who cares what others say or don't say. No one can judge. Take care of yourself. You give me hope for my son.... thank you
Don't worry about being in a wheelchair. It will help you out a lot & you'll forget you are using one eventually. What I mean is that you wont even notice that you are using it like when you first use it for the first time that you might feel like a thousand eyes are looking at you.
A power-wheelchair is awesome & compare to not having one & having to walk in pain, its a big difference.
I hope the pain lowers once you get your p.chair. I had to wait 3 months to get mine but Im happy now.
Just saw your video and I think what you show us is very real, and the fact that you're not afraid to show some emotion tells me you are VERY able to deal with this. I have EDS and I use a powerchair as well. I am not able to go out of the house without it even though I can still walk a few feet inside my house, so to me having that chair means freedom itself. I really hope you will soon be able to discover that for yourself. Hang in there, you're doing great!
You seem a lovely woman. Dont get to upset. I know its difficult, when i found out me and my son had EDS IV my world fell apart. Its scarey i know! I have my moments when i have a cry mainly for my son. I did not know i had it until my son was born very ill due to EDS IV. Even though i had all the symptoms of EDS, none of the dr's had heard of it so it went unoticed.
Hi there, good to hear some news from you again, although it's not all good news. But it's good to see that there is no cardio-issues.I know you're tough and have a lot of respect how you handle your situation. You have a lot of mental strength.
I am 14 years old and I have Ehlers-Danlos Syndrome too. I dislocated so much at school I had to stop going. In 5 months I had 3 surgeries on my shoulders and Im due for another one soon. I know what its like to be judged by EDS. Daily people ask why i fall or why i have to wear the splints. It is very brave of you to put these videos out. I just want you to know that there are other people who are going through the same thing as you are. Please reply if you want
How long have you know that you had EDS i knew when i was 8 so for 10yrs now i have type 3 so dose my mother and my sister who is a twin my mother is in awheel chair has been for 13yrs now so i have seen her go threw some bad times she can not walk at all is that the same with you well i have never spoken to any one or talked bout it with anyone else that has it part from my mum n sis please right back to me if you have time TC GOD BLESS :)
I am so sorry you have to deal with this. I wish you the best. You are amazingly strong and have been so brave. Truly an inspiration. Know that you have a positive effect on others.
Be aware of your surroundings, be aware of how your mind perceives the notion of self. Examine all the thoughts and emotions that feed your self concept. Be mindful of your experience as it arises. Observe it, without grasping it or labeling it "mine." As you become less self absorbed, your awareness will expand, and you will find peace.
Congratualations on the cardiogram, but im sorry about what happened with the specialist..Im truly sorry about your condition, but its a good thing you are spreading the word! Im sorry you definitley have it, but with luck eventually someone may cure it someday, good luck, and its amazing that you have the courage to make these videos, please keep us updated as much as possible.
Rockerchick your strength is absolutely inspiring.
When my favourite writer (Terry Pratchett) discovered he had alzheimer he went on a public campaign to raise awareness about his illness, when asked why he was doing so he replied by remembering a well known rule of fantasy and folklore: "Before you can kill the demon, you have to say its name.
That's exactly what you are doing with this channel. The way you speak about your Ehlers Danlos Syndrome is a way to show that bastard it can't (...)
you keep strong like you always have been. Dont let nothing take your joy away. You are never alone. Like i always said, you are my sister 4life. That mean i will always have your back no matter what. I would kick some ass if i found out some1 was being mean to you. just keep your head up. Oh yeah, don't forget you can use your music as a weapon. stay joyful, stay strong, stay in touch.
Your attitude towards your situation is very inspirational, thank you so much for sharing your experiences with us. My heart is with you and your family, much love.
I am so happy to see you so accepting of the circumstances, and so willing to rise to meet it. I know a few people that would have given up by now. You remind me of a certain friend of mine who has recently been presented with some terrible terrible news about her health, and it has changed her life forever, I have been sharing in her pain, and helping to bring her joy, as well. If you ever need any supplemental encouragement, please do not hesitate to contact me! Keep your spirit up! Cheers!
One thing I notice is that after every time you talk about a setback, you come back and let everybody know that you're gonna push through it... You are too awesome! I hope you know how much this encourages people, not only to hold our heads up high through whatever happens, but also to count our blessings. You're setting an amazing example for anyone going through any kind of problem in their life. I have a lot of respect for you!
first of all sis thank you .you are the best sis in the world,and ill always be here for you,and those that love to start things with my sis i will find you and kick your ass.but my sis tracie never give up on life i will be here with you thru the good and bad,,love you forever barbie know as darkangelgirl7.. thank you sis ..
My heart goes out to you ( will write u private with thoughts ) Dont worry about the mobility thing, it will save on your pain so you can enjoy the good moments... keep trying to walk as its good for core strengh but take advantage of the devices to save on your pain levels...... My heart goes out to you
What makes a person's life is not the number of breaths you take, but rather the number of moments and things that take your breath away. Seeing how strong you are in both of your videos has been one of those things that has taken my breath away. You are truely a strong and amazing person, and I hope these videos server as an inspiration for many people for a long time to come. Stay beautiful, stay strong. I'ts people like you that make this world a bit better for others. Aaron
I'm sorry to hear your mobility is limited, but your strength and resolve under your condition is admirable and inspiring. Remember that you're not alone and what you are doing is noble in increasing awareness on this terrible disease. Remain strong as always and know there is more to you than this disease and it doesn't define you. I will be hoping things get better for you in any way that they can. Stay metal and stay strong.
Tracie, I have said it before and will say it again, you are NOT alone. I take you where ever I go. You are in my thoughts and prayers constantly. This is not just you battling this, for as we are all battling for you. My concern right now is for you to be as comfortable as possible and PLEASE, whenever you feel down, think of me, your family, friends, and the people who care about you the most.
RIP Tracie, you are missed.
danthehempsmog 2 months ago
Comment removed
danthehempsmog 2 months ago
Why exactly is walking difficult for you? For me, it was horrible sciatic pain that i just thought was associated with ED...was always on crutches. But after many many MRIs it was found I also have ankylosing spondylitis, which can be related to hypermobility. I was put on Enbrel injections that have helped SO much with walking and now after years of not being able to walk I now can. I'm still in pain and limp, but I am so much better.
jennadrums 9 months ago
When I searched for Ehlers Danlos on youtube I figured I would get no good results. This is exactly what I wanted, someone who understands and is going through it as well. I'm watching all your videos, you have no idea how much you are helping people, thank you so much!
jennadrums 9 months ago
who the hell disliked this!?!?!
HazelLangford 10 months ago
@HazelLangford whoever disliked this is an $#%$^&
pamplify 7 months ago
Comment removed
danthehempsmog 2 months ago
your really pretty :)
adamwiesner1 10 months ago
I wanted to leave my email.
If you ever need to talk. And wanted to know what you thought about me saying anything to my dr. About the disease. How is it diagnosed? Blood work? Thanks.
Kittencuddler68@msn.com
Denise in Maryland
Kittencuddler 10 months ago
I first want to say your in my Prayers. Your a very strong person.
I was told I have Fybromyalgia about 10 yrs. Ago, then I got severe arthritis in both feet at the same time, they have never seen that, my feet are turning outward, I have arthritis in both knees, I also have nerve damage in both feet & lower legs, which they don't know why, all this started when I was about 30, I'm 42. I haven't been able to drive in 8 yrs. Have to walk with a cane, sometimes my hips hurt so bad , it feels like
Kittencuddler 10 months ago
god, i have eds type 3, and doctors are just rude to me if i go in on the super bad days. keep on rocking.
NinjastormVII 1 year ago
my son and i were just diagnosed yesterday with EDS hypermobility ...i havent seen my mom for 20yrs but i hear she has arthritis really bad and my grandma was in a wheelchair because of it..my mom also has had some heart problems .i didnt even know what EDS was until yesterday..we are waiting for my son to go in for a echocardiogram..anyways , i was looking to learn more about EDS..thank you for sharing your videos..
calbri27 1 year ago
my son and i were just diagnosed yesterday with EDS hypermobility ...i havent seen my mom for 20yrs but i hear she has arthritis really bad and my grandma was in a wheelchair because of it..my mom also has had some heart problems .i didnt even know what EDS was until yesterday..we are waiting for my son to go in for a echocardiogram..anyways , i was looking to learn more about EDS..thank you for sharing your videos..
calbri27 1 year ago
Hy!! My name is Betsy i have Ehler Danlos Syndrome, i looking for group support
aGodisgood7z 1 year ago
I know someone that was recently diagnosed with this..my prayers and thoughts are with all of you who have eds. Please try to stay positive...You are a beautiful young lady...and thanks for educating us.
sharsand1 1 year ago
You actually kind of look like me, and I can't believe you're 32. You look so young. I don't know if I have the disease yet, but I am getting tested because I have a lot of the symptoms. I have a lot of problems with my feet, legs, and back.
AlycenChesley 1 year ago
We are only as strong as we can be, dont ever be to hard on your self or whom is around you. I to have EDS type 3 dose my sister who is a twin and as dose my mother my mum found out what she had it was to late for her and me well they new when i was to but was not completly sure till i was 8 i love my life all even i know it is hard but we all have a genetic problem even if it dose not show we just have to be strong im sorry you did not find out earlyer TC GOD BLESS X :)
aunexsiss 2 years ago
Hello dont give in stay stay strong
aunexsiss 2 years ago
I hope u get better soon.
Movie444channel 2 years ago
i feel ur pain i really do. They said i had a horible case a kyphois but im okay now, you will be okay!
PastryPanic0506 2 years ago
god bless you tracie your a beautiful young lady that never gives up hope
MrsUpTownGirl 2 years ago 2
your amazing young lady god bless you
NickelbackIsSexy 2 years ago 2
when i was diagnosed, i went to 2 doctors and they both brought in students and newer doctors so they could see what EDS was too.
BuddyBoy091994 2 years ago 2
You are such an inspiration!
Pinchysandcrab 2 years ago 2
Curious - have you ever tied acupuncture to help with the pain? I have a mild case of EDS, a family member has a severe case, and they are considering acupuncture....by the way - love your videos and postings!
Lessa3102 2 years ago
Its great that You can be so Confident about it all.You should never be Ashamed of It.
fatherbigley 2 years ago
I just wanted to tell you that I will be praying for you. I know its hard but your mind is strong and your strengh to overcome what life brings you is there. My son who is 12yrs. lost his father 2 yrs ago to eds and my son was just diagnosed with eds type 4 a few days ago. Who cares what others say or don't say. No one can judge. Take care of yourself. You give me hope for my son.... thank you
moma215 2 years ago
wow, sorry i missed your new vidz...i read your messages, but didn't see your new vidz.
keep the vidz coming tracie....my pain seems insignificant compared to your's
DakotaPunk 2 years ago
Rock on!
shep79 2 years ago
Don't worry about being in a wheelchair. It will help you out a lot & you'll forget you are using one eventually. What I mean is that you wont even notice that you are using it like when you first use it for the first time that you might feel like a thousand eyes are looking at you.
A power-wheelchair is awesome & compare to not having one & having to walk in pain, its a big difference.
I hope the pain lowers once you get your p.chair. I had to wait 3 months to get mine but Im happy now.
JOSYMOL 2 years ago
Hi there!
Just saw your video and I think what you show us is very real, and the fact that you're not afraid to show some emotion tells me you are VERY able to deal with this. I have EDS and I use a powerchair as well. I am not able to go out of the house without it even though I can still walk a few feet inside my house, so to me having that chair means freedom itself. I really hope you will soon be able to discover that for yourself. Hang in there, you're doing great!
Sock211 2 years ago
this girl hear has a huge heart she never gives up on life! shes very beautiful and very caring so dont mess with my sister or ill get you!!!!
heavensangelz1 2 years ago
im here with you forever sis .
need anything im here always for you
your the best sister ever!
LovelessWoman711 2 years ago
You seem a lovely woman. Dont get to upset. I know its difficult, when i found out me and my son had EDS IV my world fell apart. Its scarey i know! I have my moments when i have a cry mainly for my son. I did not know i had it until my son was born very ill due to EDS IV. Even though i had all the symptoms of EDS, none of the dr's had heard of it so it went unoticed.
Stay strong, you will get through it x
6littleducks 2 years ago
Hi there, good to hear some news from you again, although it's not all good news. But it's good to see that there is no cardio-issues.I know you're tough and have a lot of respect how you handle your situation. You have a lot of mental strength.
May the metal gods be with you =).
Asphyx123 2 years ago
You are sweetheart with a heart of gold!!
mindfulmusic78 2 years ago
I am 14 years old and I have Ehlers-Danlos Syndrome too. I dislocated so much at school I had to stop going. In 5 months I had 3 surgeries on my shoulders and Im due for another one soon. I know what its like to be judged by EDS. Daily people ask why i fall or why i have to wear the splints. It is very brave of you to put these videos out. I just want you to know that there are other people who are going through the same thing as you are. Please reply if you want
rileyyroo13 2 years ago
How long have you know that you had EDS i knew when i was 8 so for 10yrs now i have type 3 so dose my mother and my sister who is a twin my mother is in awheel chair has been for 13yrs now so i have seen her go threw some bad times she can not walk at all is that the same with you well i have never spoken to any one or talked bout it with anyone else that has it part from my mum n sis please right back to me if you have time TC GOD BLESS :)
aunexsiss 2 years ago
I am so sorry you have to deal with this. I wish you the best. You are amazingly strong and have been so brave. Truly an inspiration. Know that you have a positive effect on others.
wideglide7777 2 years ago
Im really sorry to hear this =(
But we love you and believe in you and we'll support you.
Keep fighting and stay fucking determined!
<3 ya
nirvanababe97 2 years ago
I have EDS too...did you know they have assistence dogs for people with EDS?
surferbuddhist 2 years ago
Really thats amazing i did not know that well it mite come in handy for me and my family thanks for the hint :)
aunexsiss 2 years ago
Sorry i for got to ask do you know of a web site it would really be helpful to my mum who is in a wheel chair for life thanks heaps :)
aunexsiss 2 years ago
There actually are ten established types...
ReineDeLaSeine14 2 years ago
Yes 10 and 3other proto types so it was said when they first started but now there is only 7 types and out of all type3 is most common :)
aunexsiss 2 years ago
this is amazing
jzmassive 2 years ago
Be aware of your surroundings, be aware of how your mind perceives the notion of self. Examine all the thoughts and emotions that feed your self concept. Be mindful of your experience as it arises. Observe it, without grasping it or labeling it "mine." As you become less self absorbed, your awareness will expand, and you will find peace.
Learning impermanence, that is key.
Kagenogunda 2 years ago
Congratualations on the cardiogram, but im sorry about what happened with the specialist..Im truly sorry about your condition, but its a good thing you are spreading the word! Im sorry you definitley have it, but with luck eventually someone may cure it someday, good luck, and its amazing that you have the courage to make these videos, please keep us updated as much as possible.
oompaloompaman5 2 years ago
Rockerchick your strength is absolutely inspiring.
When my favourite writer (Terry Pratchett) discovered he had alzheimer he went on a public campaign to raise awareness about his illness, when asked why he was doing so he replied by remembering a well known rule of fantasy and folklore: "Before you can kill the demon, you have to say its name.
That's exactly what you are doing with this channel. The way you speak about your Ehlers Danlos Syndrome is a way to show that bastard it can't (...)
flan984 2 years ago
Comment removed
flan984 2 years ago
() defeat you and, at the same time, to raise our own awareness.
That is truly admirable.
Best wishes and keep fighting.
flan984 2 years ago
Keep Strong Dude! And keep on rockin. That shit heals.
EvilWays123 2 years ago
your going to be okay.
whiplash505 2 years ago
you keep strong like you always have been. Dont let nothing take your joy away. You are never alone. Like i always said, you are my sister 4life. That mean i will always have your back no matter what. I would kick some ass if i found out some1 was being mean to you. just keep your head up. Oh yeah, don't forget you can use your music as a weapon. stay joyful, stay strong, stay in touch.
Your Bro 4life
Larry
jtcomicm1 2 years ago
Your attitude towards your situation is very inspirational, thank you so much for sharing your experiences with us. My heart is with you and your family, much love.
WannabeKiwiBoy 2 years ago
I am so happy to see you so accepting of the circumstances, and so willing to rise to meet it. I know a few people that would have given up by now. You remind me of a certain friend of mine who has recently been presented with some terrible terrible news about her health, and it has changed her life forever, I have been sharing in her pain, and helping to bring her joy, as well. If you ever need any supplemental encouragement, please do not hesitate to contact me! Keep your spirit up! Cheers!
TasceDakari 2 years ago
One thing I notice is that after every time you talk about a setback, you come back and let everybody know that you're gonna push through it... You are too awesome! I hope you know how much this encourages people, not only to hold our heads up high through whatever happens, but also to count our blessings. You're setting an amazing example for anyone going through any kind of problem in their life. I have a lot of respect for you!
~Keep it Heavy!~
Bookster343 2 years ago
first of all sis thank you .you are the best sis in the world,and ill always be here for you,and those that love to start things with my sis i will find you and kick your ass.but my sis tracie never give up on life i will be here with you thru the good and bad,,love you forever barbie know as darkangelgirl7.. thank you sis ..
DarkAngelGirl7 2 years ago
sweetie..take your time..catch your breath..we got your back..always gonna be here..we love you honey.....
samantha3172 2 years ago
My heart goes out to you ( will write u private with thoughts ) Dont worry about the mobility thing, it will save on your pain so you can enjoy the good moments... keep trying to walk as its good for core strengh but take advantage of the devices to save on your pain levels...... My heart goes out to you
Warm Blessings
Linda x
Elfins 2 years ago
What makes a person's life is not the number of breaths you take, but rather the number of moments and things that take your breath away. Seeing how strong you are in both of your videos has been one of those things that has taken my breath away. You are truely a strong and amazing person, and I hope these videos server as an inspiration for many people for a long time to come. Stay beautiful, stay strong. I'ts people like you that make this world a bit better for others. Aaron
Zorlac0666 2 years ago 2
rock on sis, keep fighting, never surrender, youll never be alone
BaconMan8910 2 years ago
I'm sorry to hear your mobility is limited, but your strength and resolve under your condition is admirable and inspiring. Remember that you're not alone and what you are doing is noble in increasing awareness on this terrible disease. Remain strong as always and know there is more to you than this disease and it doesn't define you. I will be hoping things get better for you in any way that they can. Stay metal and stay strong.
espadaz 2 years ago
Tracie, you'll be the hottest rockenbikerchick on youtube! Watch out for them blue light specials :)
Hang in there were prayin for ya!
fourty5mag 2 years ago
damn I like your vids, thx and remember ! Be strong :)
fast00pl 2 years ago
Tracie, I have said it before and will say it again, you are NOT alone. I take you where ever I go. You are in my thoughts and prayers constantly. This is not just you battling this, for as we are all battling for you. My concern right now is for you to be as comfortable as possible and PLEASE, whenever you feel down, think of me, your family, friends, and the people who care about you the most.
m169marroquin 2 years ago
hey sweety im so happy you r staying strong thro all ov this
love ya sis keep ya chin up
big hugz
axllover09 2 years ago
KEEP ON KEEPING ON!!
kingrunnisfilms 2 years ago