Thanks for this video. It has helped me wake up. I feel really sorry for the times I may have looked angry at a young normal healthy looking person using an electric cart at the store. This video helped me realize my ignorance. A young teenage girl in our church just was diagnosed with this syndrome and I was researching it and found these videos. Wake up call for me,
I have EDS too, with chronic joint pain, hypermobility, and I've had 7 reconstructive foot surgeries, and I'm only 18. So I can relate with you on the stares and whispers and degrading. I'm in constant pain too, And sometimes when I'm walking, if I can walk, I just fall to my knees and sit down for a minute to recollect myself. I just had my last surgery this February, but all I can say is that I feel your pain, you are not alone, and you CAN push through and do whatever you want in life.
Hi i have a son that was just diagnosed with EDS Type 3. we also are going to the U OF M for treatment. they also believe i have it. which doctor do u see? i have fibromyalgia and a bunch of other things wrong with me. Had a spinal fusion in 2007. I am only 31 yrs old. i am looking for answers.
You are not alone. We have Ehlers-Danlos too. We wanted to join the Army Rangers, but, at this time, we are unable to even perform Push-Ups without extreme pain following the exercise.
also, my four year old has hypermobility EDS and a dilated aorta. my first ortho appointment in years was just a few minutes long. he moved my arm, my shoulder dislocated, he sent me for x-rays, scheduled an arthrogram and wanted me to have surgery. now i have to file for social security. let them tell me i can work when i have multiple doctors who say that idea is a joke!
i have hypermobilty EDS along with vascular issues and now, things like a severely degraded spine. i am 23 years old and i can't take my children to church on easter because i can't physically make it there. "degrading" is one of the best words you could possibly use when describing so many things we have to go through. for me, other than the open letter to someone without EDS and the spoon theory, the best example is that i am at war with my body every day. it is winning but i won't give up.
This video makes my very sad. I've been in chronic pain for 4 yrs now and I have had sciatic pain since I was 6, my elbows fell out of joint too. I've been goin 2 the docs for 5 yrs with the pain progressing and being unable to walk some days i nearly impossible (i use crutches th@ hurt my shoulder because I'm scared of having 2 use anything else) I'm now w8ing 2 be diagnosed by a specialist, at least they've now found the problem. Being told there's nothing wrong over and over is degrading
I have EDS (Type III) and have gone through a lot of what you are describing--thank you so much for spreading awareness :) I wish more people (and doctors) knew about it. Its hard living with any type of disability-- to live with an "invisible" one is especially difficult, especially when trying to explain to people what it is (because as I'm sure all people with EDS have experienced there are so many people who say "But you look just fine!")
My friend believes she has EDS, She has every symptom that's listed in this video but she's not on a walker. She's going to get it checked by her GP tomorrow, which I'm glad she is doing. Was wondering if there's anything I can help do as a friend ? I feel quite helpless.Sorry to hear that you have it so bad, and if possible, I hope it gets better soon, you seem like a nice young lady and thanks for uploading this video, without it she'd still be unaware that she may have EDS. Thanks x
When did you first start noticing symptoms? I think they're about to diagnose my little sister with it. She's 13. Do your symptoms increase as time goes on? I guess I'm asking you this because I want to know if she'll eventually end up to the point where she'll need a walker and/or her joints will pop out when she's sleeping. Thanks so much.
@DeeyaSophia Maybe I could help if you're still interested in a response. My mom actually first noticed hypermobility as an infant. The first thing I noticed was that I couldn't straighten some of my fingers, namely my thumbs, until they would "pop" and be straightened, followed by a lasting dull ache. I was about twelve when I was diagnosed and it was because I leaned against a door frame with a raised arm and my shoulder rolled out of its socket. From there, it progressively worstened
@DeeyaSophia until my other joints were doing the same thing. Each year things just get looser and the pain more constant. I don't have an extreme case, but I still can't play certain sports and have spontaneous dislocations leaving my on crutches and such. Also, it has affected my digestive system somewhat and I have a tendency to have drops in blood pressure upon standing. To help your sister, if she has it, vitamin C and calcium suppliments in high doses have been helpful.
@DeeyaSophia Also, encouraging her to build muscle around unstable joints can often help stabilize them. For example, I couldn't do push-ups or pull-ups or weight bearing exercise without dislocating my shoulders, but after gradual, gentle training of the muscles, I have more control over certain joint subluxations. I usually don't discuss it because I feel like a hypercondriac whenever I talk about health, but I thought I may be able to help you and your sister. Let me know if I'm right!
I have EDS type 3 also, I'm 14 almost 15, I've dislocated my left knee 4 times and my right knee once, the time my right knee went out my left one did too, so a double dislocation :/ i have other problems too. Like you are, I am in pain, everyday, all day I recently found out that May is national eds awareness month (: spread the knowledge.
Thank you so much for posting this video. I was diagnosed with EDS when I was 9 I am 16 now. Alot of people dont understand how tough it is to live with EDS. Even more in high school because I get those mean kids that think its funny because I've dislocated or in another brace and its hard it hurts alot. But thanks for posting hopefully you'll help some people understand!!! :)
Jeeezzz i know the sleep and pain issue all to well, i have a disiorder that makes my joints mega stiff and swell up, it's called Psoriatic Arthritis, it's like the dead opposite of what you have as i have lack of movement. Hope all goes well for you and you get the right treatments.
I was diagnosed with EDS Hypermobility Type when I was 13 years old. A lot of people really don't understand that it takes a lot out of people with EDS to do daily activities. When I walk around sometimes I have to limp because my knee will be hurting so bad that I can't put any weight on it people look at me when I limp and stare at me like I'm some kind of freak, but they don't understand the pain I'm going through. But I've learned to live with it and dismiss those stares. My sister had it to
I think you are very courageous. I'm am sorry that EDS causes you to rely on your walker at times. Please don't let small minded people make you feel embarrassed or ashamed. I think having EDS gives you an inner strength, wisdom, patience that other people cannot understand. Congratulations on College working towards your dreams. Both of my now adult daughters have EDS as well and although, it took extra time & effort, they both graduated. You have EDS but it does not define you.
This was heartbreaking to watch. My heart goes out to you. I was diagnosed with EDS in '07 & sometimes still can't believe it. Good luck to you & I'm thinking of you...Angel
Thank you for sharing your story. It hit me hard as I only wish my family and friends could hear you. I have never met anyone with this disorder and most people I try to share with just CANNOT understand. It is very lonely to not ever know anyone who is living with this disease. I will remember you in my prayers
My so happy that I found your video, my daughter is suffering greatly and has been for 4 years off and on. She also suffers from alcoholism that she inherited from her Dad, she got EDS from me. Both of my sisters have it, the classical type, so when Jill had her symtoms, all Type III, I didn't put the pieces together until I saw my daughters hip joint pop out, then I knew! She is fighting for her life right now, she is down to 86 pounds from her addiction and has been self medicating.
I also suffer from Ahlers Danlos but it wasnt til recently that I found out that it's more common then I thought. Mine isnt as severe now but I worry that it could get worse in the future mainly in my shoulders. Skateboarding is such a huge part of my life and I truly fear losing it one day because of this but I wont stop even if it makes things worse and even cripples me I will not give up skating. Thank you so much for posting this you are very brave for doing this. You are very brave =)
My name is Patti .. Im sorry to hear of your condition .. My son Nicholas passed away from a connective tissue disorder called Juvinile dermatomiositis.. .. Hang in there dont ever give up.. You are one awesome young lady .. Peace ..
Hi Tracie you have done an excellent job of telling us about your illness.And you are so right people are un real and they should be more nicer to people in general and people with disabilities.I pray that your pain goes away and I thank you so much for making me aware of what you are going thru.Bless you my dear and I pray that you get everything that you and your family needs.Please take care Hugs:)
Will (fatherbigley) also shared your video with me.. I wish you all the best and pray you have the strength and courage to get through this. God bless you and be with you Sweetie! Hugs xxx
It is a pleasure to meet you. Will (fatherbigley) sent me your video. You are such a strong woman. Thank you for sharing your story. Much love to you!
I have type 3 EDS i am 14 years old and thanks for putting this up. I feel so alone sometimes. Doctors didn't know why i was breaking things and spraining things for no reason. I am in a wheel chair in school. . . It is very hard, its my first year of high school and I am always being asked "what happened?" because i used to be walking and doing everything just fine. Please raise awareness!!! The more people know, the better chance of finding a cure!
Hi I have type 3 eds like you. I have hypermobility in my joints I cant do the shoulder trick or the hips mine is in my knees and feet with dislocations. I have been made fun of for my condition lots over the years and the thing is I can do alot of things "normal" ppl cant. I take a steady diet of vitamins and I take pure collengen pills helps LOTS with pain. you have to stay active and strengthen your joints as best as you can for me my whole life has been mind over matter and Im still here;)
Thanks for the video-I don't know if 'we" have this-but "we" my kids and I and family on my mother's side seem to have many of these issues. Now-if people give you and others 'dirty looks" it is THEIR SHAME. I know you and everyone else would give ANYTHING to be well-people who have no empathy are the SICK Ones! Love and God's Blessings to you all...
How do you like your device for mobility? do you have silver rings splints? to support your fingers if not I highly recommend that you look into them if you need direction let me know. I have been wearing mine since 200 24/7 and can't live without at least my right pointer finger and thumb supported. Who is your doctor? did you see Dr. Elizabeth Petty at U of M? She is supposed to be taking an interest in EDS and should be up to date with EDS findings. Personally I didn't care for her LOL
Hello I am 39yrs old mom to 5 children 4 with diagnosis of EDS Classical type I. My oldest is questionable I believe he has it based on symptoms he just doesn't have the stretchy soft skin they doctors are conditioned to look for. Do you have Hypermobility type? Since Dec 08 when my daughter was 11.5yrs old she started showing signs/symptoms of POTS "Postural Tachycardia Syndrome" she is now 12. It took me 30yrs before I got diagnosed here we go again trying to get POTS diagnosis. We are in MI
My son has EDS he is 4yrs old one of his hips is dislocated, one of his knew bends when is standing because it is too flexible and just because he doesnt walk normal, people stare and it bothers me that they look at him different , alot of parents will even assume their kids are smarter than him just because of the way he walks and his condition . I know exactly how u feel about it .
Thank you for posting this. I feel and sense your pain. I too have Ehlers-Danlos hypermobility type. I was diagnosed w/ this first then went on to be diagnosed w/ lupus as well. It's awful to be so young and look so normal and be in so much pain. Hang in there. You are not alone.
This actually brought tears to my eyes. I know what it's like to have a condition that you have no choice but to live with. And the very fact that you've made this Incredible video just goes to show that you are Living with your disability with Tremendous Courage and Strength. Please Stay Strong, and know that no matter what anyone else thinks of you or your disability, You are an absolute Angel. My thoughts and prayers will always be with you ~ Ru :) xoxo
You're really barve and amazing for making this vid, i hope maybe someday you can get better. Stay strong, my friend. There are many people stay beside you, encouraging you.
all you've got to do is to be strong.... don't think whatever people think of you.... some might look pity, some might look hatred.... stay strong, be positive and I know you can do it..... my friend Will, sent this video and I will share with all my friends too.... and my thoughts and prayer will always stay with you.... take care :)
i am 13 and in a wheelchair and its not embarresing to me? it just hurts..i would figure a walker being way more embarresing but i see stare all the time so i give them dirty look or flip them off that helps...i feel for you tho,,, keep fighting hun
I came Across you video & as I watched it, I Could Feel & Understand The Heartache & Pain That You Go Through. What Also Touched Me Was When U Said, People With Disabilitys are Normal Too & That Others Shoudln't Stare. I Agree With You So Much!!! Just Because 1 Needs To Use a Chair/Walker/Cane, Doesn't Give Any1 The Right To Stare & Judge. Its Hard Enough Enduring Without The Ignorance Of Others. You Are a WONDERFUL Brave Angel & May God Richly Bless You. Thank You For Sharing This With Us. HUG!
While I was watching this vid all I was thinking it's how you're better than a lot of people I know. You're so much better, so much sweet and kind. And I think you're normal. Actually you're more than normal. You're better than simply normal. You're an angel.
Just enjoy your medicine(heavy metal) and try not to care about the others. They are staring at your beauty!
So many people in this world are lame and take life for granted or think only of themselves. Many might hurt your feelings but remember many out there have you in their prayers.
I am really touched by your video and brought to tears. You're very brave and smart for bringing awareness to this. I have painful TMJ and have been diagnosed with hypermobility, usually they come hand in hand. I am looking into EDS because I think that I have a minor form of is, as now I've a heart murmur and carpel tunnel syndrome. I'll pray for the both of us!!!!!! Keep it up girl, I respect you so much.
GOD Bless you, Im sorry about your pain, is there anything outside of chemicals to treat this or cure it? You dont older than 21 or 22 :). I wish you the best.
A friend of mine sent this video to me. Thank you for sharing your story. I always love hearing people's stories because they are very inspirational and reminds all of us that every day is a gift no matter what conditions we are dealing with in life.
Gratitude, Love and Hope for creating and sharing this video ! Very uplifting and positive message ! As a handi-capable person, myself, with family members who have multiple differently-able conditions, I totally agree with all You 8))))
I want to thank whenyouneedsomeone for sharing this.
While I will not take pity on you (most people with illnesses don't want to be pitied), I will tell you that I am sorry for the condition that you have and I hope that your trip to UM is an eventful one.
I do hope with continuing research and developments that a cure can be found.
Those morons that stare or make faces, do not pay them any attention as we should "ignore" those that are ignorant.
5stars for awareness raising by making this video. I am familiar with it but it is hard to explain and you did a great job. I want you to know if you do not already that there is an eilhers danlos association also. They are quite wonderful. peace and love and you are a beautiful gorgeous lady. :-)!
I want you to know that I am 38 and have suffered from severe arthritis and mitral valve prolapse since I was 16 years old. I completely understand what it is like living in pain daily, having to deal with doctors, medications, depression, and everything else that comes along with a condition such as yours and mine.
We are normal, there will be things that you can't do any longer but you will find things you can do better than most. I took up knitting and love it, great mobility exercise for the hands. You will find your place in the world it may just be different from what path you thought you were on. :D
By the way a friend (Fatherbigley) forwarded me your video and I don't even think he realized that I too suffer from a mobility disorder and heart condition. If you ever need to chat just send me a PM, I'm sending you an invite so you can comment on my page or send PM's since I have a friends lock.
Sorry to hear about your condition. You are so right. It;s difficult for people to understand if a person doesn't look ill, one really can be !! Take care ! A.D. :)) thank you for sharing Jolanda
I can only imagine what you must be going through. The only thing I can offer you are my prayers and my love. I wish I had more to give you. God bless you and your family. Eve ;)
Hello my dear.. your story is very touching and heartfelt.. I hope all is going well. I favorite the video for more of my viewer show interested in ur message to others.. last Shout out to Will on youtube.
Thanks for sharing this with me....and I agree, you are a beautiful person inside and out. I wish you all of the best, and you definitely have my support :)
May I give you a little advice? When you notice the whispers or the bad looks - just answer with a smile. I know it hurts but they are not worth your tears... You are wonderful. All the best.. Diana :)
Hey.. I admire your strength. You seem to be such a beautiful person in and out and for the pain you have to bear day by day you really have all my respect. Thanks for telling your story, I was sent to your video and I'm so glad that I clicked on your video, You're a SuperWoman in my eyes...
Im so impressed of you girlie, and even if I dont need a walker i can understand you 100%... Like Dustin said... Hang in there... The important thing is to accept the situation, you cant change it, just make the best of it!
Thanks for posting this video... Wow, so very brave of you. I have been dealing with EDS since I was a little kid. Are you on facebook, maybe we can have private chat... again, thanks
i think its awesome that you have put this up, a lot of people sit around when they disorders or diseases and sit ashamed of themselves for having it, i think you should be proud of yourself for putting this out there, i agree with extremerecording, i dont think you should view yourself as different, you are a normal person, a normal person with different circumstances, you are a strong person who deserves recognition for what you deal with on a daily basis.
Sweetheart, there is a cure for all of this. It will be given to you, but the way to get it is to change your view of yourself. This could take a few years of practice but you have to stop seeing yourself as challenged and see yourself as whole. Also you would need to find out what it is that is making you feel subconsciously comfortable with the disorder. If you are able to get through the layers, you will lose the pain. Talk to Terry Cole Whittaker. She will show you.
i'm also 32 and live in pain everyday. i had a spinal fusion that made things worse instead of better. that along with severe nerve damage in my legs forces me to use a cane. i feel for you and hope things get better and easier for you.
i have congenital dissorder and peopel woudl pick on me
because my elbows looked different to most people
which was upsetting
i hope your okay
i really feel sorry for you
and can sort of sympathize
cause peopel need to understand
that ist not a laughing matter and it does hurt
what people say, i wnet an entire year being hurt by peoples abuse cause my arm was some what angled like a right turn arow and people would call me banana rm and such its upsetting but ppl are stupid :(
ppl can b cruel but dont listen to what they say your brave and i hope all goes well with you and that one day they will find a cure or something to help you with the pain
but the thumb-thing? is that really connected to a disease? i can crack my left thumb out of joint in a very disgudting manner. and im healthy (enough).
Closing in on 3000 views. Maybe this will help people to take notice, and understand what others go through. And maybe in the end raise awareness and cause someone to start the research that could end up curing this for people down the road.
omg im so sorry :( i don't think i would ever be able to feel your pain, but for a complete stranger you completely reached out to me, which is a really big achievement , i completely understand and no matter what your completely normal :) here for u. J x
I have the same cologen thing with the stretchy skin. But not the hyper flex although I am double jointed. I do have other medical issues, I think everyone has there issues its just you can't always see them. Thanks for sharing
The world needs to see that we all are humans on the inside, no matter how we seem to be on the physical outside.
I learned this because i grew up kind of lonely and socially handicapped.
You make a difference when posting videos such as this one. You seem to be nice, and that is the most important trait anyone can have. I hope that people will listen to you and understand this! :)
AAAAHHHHH!!!! Oh my god. Sorry the bone dislocation part made me wanna vomit. I hope you can get something that can cure that or something. That sucks. Good luck.
Don't even worry about these people that want PROOF. The information you gave was specific, and no, you never sounded like you were "asking for help" about a single thing.
For the people that don't get this, this was a video meant to help OTHER people that might be going through struggles and to inform people that don't know about this. You should be thanking her.
Shut The Hell Up Man She Is An Amazing Individual She Does Have EDS Ive Been Speaking To Her Shes Amazing!! Y The Hell Wood You Want her To Put A Vid Of Her Using A Walker Are U Mentally Disturbed Or Something???
Just Leave Her Alone Shes Going Through Alot Man Just Leave Her Alone or Be Nice! Y Do You Watch These Vids If Your Gonna Say That Youve Obvs Watched others coz u sed another help video man its just rong if u do this on videos like this shes an amazing person so leave her alone
*Sigh* Another know-it-all YouTube kid that thinks a single comment will spur the response of the one that had the GUTS to actually MAKE a video in the first place. Really, do you think she would go through the effort of making a video and putting her face up for the world to see, all for attention from anonymous people on the internet? She seems very confident in herself, so NO.
And what does "proff" mean, smart guy? check your grammar before you attempt to sound like you know shit.
Kudos to you for throwing this out there. You are one strong individual. I admire your courage. I am subscribing so I can stay updated on your status. I have to say, you surprised me the most when you said your age. Stay strong, and be well. I believe God is going to do a great work in your life, and I will pray that he keeps you strong, and blesses you for your courage. Things seem to be more difficult than is just, but hang in there!
Hey rockerchick just want to say that you are a beautiful girl and dont need to pay atention what others say about you.Stay with your true friends and like the other guy/girl said keep your chin up.
This slut died.
MuslimBrezz 1 month ago
Oh and I am 22. >.<
elizabethlea27 2 months ago
Thank you for this video, I relate so much. Sitting up increases pain. I am in pain 24/7 as well.
elizabethlea27 2 months ago
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I have type 3 my parents think we cant test yet but ill post a video of my flexibility :( im sad for u sympathy all the way girl :(
hamsta123321 3 months ago
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dolly3po 3 months ago
I have type 3 as well. I completely Sympathize.
sehan1228 3 months ago
Thanks for this video. It has helped me wake up. I feel really sorry for the times I may have looked angry at a young normal healthy looking person using an electric cart at the store. This video helped me realize my ignorance. A young teenage girl in our church just was diagnosed with this syndrome and I was researching it and found these videos. Wake up call for me,
AppearingApril 5 months ago
I have EDS too, with chronic joint pain, hypermobility, and I've had 7 reconstructive foot surgeries, and I'm only 18. So I can relate with you on the stares and whispers and degrading. I'm in constant pain too, And sometimes when I'm walking, if I can walk, I just fall to my knees and sit down for a minute to recollect myself. I just had my last surgery this February, but all I can say is that I feel your pain, you are not alone, and you CAN push through and do whatever you want in life.
impossiblethumbs 7 months ago
Hi i have a son that was just diagnosed with EDS Type 3. we also are going to the U OF M for treatment. they also believe i have it. which doctor do u see? i have fibromyalgia and a bunch of other things wrong with me. Had a spinal fusion in 2007. I am only 31 yrs old. i am looking for answers.
fibrogirl3 7 months ago
You are not alone. We have Ehlers-Danlos too. We wanted to join the Army Rangers, but, at this time, we are unable to even perform Push-Ups without extreme pain following the exercise.
MSIGINT 8 months ago
also, my four year old has hypermobility EDS and a dilated aorta. my first ortho appointment in years was just a few minutes long. he moved my arm, my shoulder dislocated, he sent me for x-rays, scheduled an arthrogram and wanted me to have surgery. now i have to file for social security. let them tell me i can work when i have multiple doctors who say that idea is a joke!
Bevin313 9 months ago
i have hypermobilty EDS along with vascular issues and now, things like a severely degraded spine. i am 23 years old and i can't take my children to church on easter because i can't physically make it there. "degrading" is one of the best words you could possibly use when describing so many things we have to go through. for me, other than the open letter to someone without EDS and the spoon theory, the best example is that i am at war with my body every day. it is winning but i won't give up.
Bevin313 9 months ago
This video makes my very sad. I've been in chronic pain for 4 yrs now and I have had sciatic pain since I was 6, my elbows fell out of joint too. I've been goin 2 the docs for 5 yrs with the pain progressing and being unable to walk some days i nearly impossible (i use crutches th@ hurt my shoulder because I'm scared of having 2 use anything else) I'm now w8ing 2 be diagnosed by a specialist, at least they've now found the problem. Being told there's nothing wrong over and over is degrading
HazelLangford 10 months ago
Thank you SO MUCH for this! I have Ehlers-Danlos type III and can relate. WE ALL NEED EACH OTHER!
Jazzyteach65 1 year ago
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I suffer from penile EDS. I'd like to help you practice correct sex posture with safe position. Guarantee to not dislocate.
Civsuccess2 1 year ago
I have EDS (Type III) and have gone through a lot of what you are describing--thank you so much for spreading awareness :) I wish more people (and doctors) knew about it. Its hard living with any type of disability-- to live with an "invisible" one is especially difficult, especially when trying to explain to people what it is (because as I'm sure all people with EDS have experienced there are so many people who say "But you look just fine!")
Thank you for posting this video :)
CelastrinaLadon 1 year ago
it's so fucked up when people make fun of disabilities
Predjz 1 year ago
My friend believes she has EDS, She has every symptom that's listed in this video but she's not on a walker. She's going to get it checked by her GP tomorrow, which I'm glad she is doing. Was wondering if there's anything I can help do as a friend ? I feel quite helpless.Sorry to hear that you have it so bad, and if possible, I hope it gets better soon, you seem like a nice young lady and thanks for uploading this video, without it she'd still be unaware that she may have EDS. Thanks x
killmadolly 1 year ago
So when people say they're double jointed, is it just a sign of this?
Fayyzz 1 year ago
When did you first start noticing symptoms? I think they're about to diagnose my little sister with it. She's 13. Do your symptoms increase as time goes on? I guess I'm asking you this because I want to know if she'll eventually end up to the point where she'll need a walker and/or her joints will pop out when she's sleeping. Thanks so much.
DeeyaSophia 1 year ago
@DeeyaSophia Maybe I could help if you're still interested in a response. My mom actually first noticed hypermobility as an infant. The first thing I noticed was that I couldn't straighten some of my fingers, namely my thumbs, until they would "pop" and be straightened, followed by a lasting dull ache. I was about twelve when I was diagnosed and it was because I leaned against a door frame with a raised arm and my shoulder rolled out of its socket. From there, it progressively worstened
Doggydooky1 9 months ago
@DeeyaSophia until my other joints were doing the same thing. Each year things just get looser and the pain more constant. I don't have an extreme case, but I still can't play certain sports and have spontaneous dislocations leaving my on crutches and such. Also, it has affected my digestive system somewhat and I have a tendency to have drops in blood pressure upon standing. To help your sister, if she has it, vitamin C and calcium suppliments in high doses have been helpful.
Doggydooky1 9 months ago
@DeeyaSophia Also, encouraging her to build muscle around unstable joints can often help stabilize them. For example, I couldn't do push-ups or pull-ups or weight bearing exercise without dislocating my shoulders, but after gradual, gentle training of the muscles, I have more control over certain joint subluxations. I usually don't discuss it because I feel like a hypercondriac whenever I talk about health, but I thought I may be able to help you and your sister. Let me know if I'm right!
Doggydooky1 9 months ago
I have EDS type 3 also, I'm 14 almost 15, I've dislocated my left knee 4 times and my right knee once, the time my right knee went out my left one did too, so a double dislocation :/ i have other problems too. Like you are, I am in pain, everyday, all day I recently found out that May is national eds awareness month (: spread the knowledge.
Swimmingmania 1 year ago
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You made me cry.. you explained it so well =)
I've types I & III and it hurts
Thank you for explaining this nasty EDS to the world my Zebra friend x
sexyladysx 1 year ago
You made me cry.. you explained it so well =)
I've types I & III and it hurts
Thank you for explaining this nasty EDS to the world my Zebra friend x
sexyladysx 1 year ago
Thank you so much for posting this video. I was diagnosed with EDS when I was 9 I am 16 now. Alot of people dont understand how tough it is to live with EDS. Even more in high school because I get those mean kids that think its funny because I've dislocated or in another brace and its hard it hurts alot. But thanks for posting hopefully you'll help some people understand!!! :)
-Christy
CRD2012 1 year ago
What type of EDS do you have
I have type 2 and it doesn't really effect my life
other then some skin stuff
PoopyPantyPoop 1 year 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!
Ananais79 1 year ago
Jeeezzz i know the sleep and pain issue all to well, i have a disiorder that makes my joints mega stiff and swell up, it's called Psoriatic Arthritis, it's like the dead opposite of what you have as i have lack of movement. Hope all goes well for you and you get the right treatments.
DibbersPage 1 year ago
i understand and i think your a beautiful person:)
fergiman 1 year ago
Hi, pilates is wonderful
Nina11204 1 year ago
i have it and im 12 it all happen when i 7 and i have so much more with it
xoxnikkixox3810 1 year ago
you are a very beautiful girl, and a very powerful person i really look up to you.
slickz90 1 year ago
Has lol sorry, typo.
shadowofangels32 1 year ago
I was diagnosed with EDS Hypermobility Type when I was 13 years old. A lot of people really don't understand that it takes a lot out of people with EDS to do daily activities. When I walk around sometimes I have to limp because my knee will be hurting so bad that I can't put any weight on it people look at me when I limp and stare at me like I'm some kind of freak, but they don't understand the pain I'm going through. But I've learned to live with it and dismiss those stares. My sister had it to
shadowofangels32 1 year ago
I have to go get tested for this. My Dr. thinks I may have this. I have a lot of the symptoms. Thank you for this video.
AlycenChesley 1 year ago
I think you are very courageous. I'm am sorry that EDS causes you to rely on your walker at times. Please don't let small minded people make you feel embarrassed or ashamed. I think having EDS gives you an inner strength, wisdom, patience that other people cannot understand. Congratulations on College working towards your dreams. Both of my now adult daughters have EDS as well and although, it took extra time & effort, they both graduated. You have EDS but it does not define you.
salsart1 1 year ago
This was heartbreaking to watch. My heart goes out to you. I was diagnosed with EDS in '07 & sometimes still can't believe it. Good luck to you & I'm thinking of you...Angel
asktunes 2 years ago
Sometimes the stares might be because your are so beautiful and pretty! They might not be looking at the walker or wheelchair at all.
xoxoxoxo
Thank you for sharing your story.
TracyLyn10 2 years ago
Thank you for sharing your story. It hit me hard as I only wish my family and friends could hear you. I have never met anyone with this disorder and most people I try to share with just CANNOT understand. It is very lonely to not ever know anyone who is living with this disease. I will remember you in my prayers
looselady100 2 years ago
Comment removed
sandrawold 2 years ago
My so happy that I found your video, my daughter is suffering greatly and has been for 4 years off and on. She also suffers from alcoholism that she inherited from her Dad, she got EDS from me. Both of my sisters have it, the classical type, so when Jill had her symtoms, all Type III, I didn't put the pieces together until I saw my daughters hip joint pop out, then I knew! She is fighting for her life right now, she is down to 86 pounds from her addiction and has been self medicating.
jillsmother1 2 years ago
I also suffer from Ahlers Danlos but it wasnt til recently that I found out that it's more common then I thought. Mine isnt as severe now but I worry that it could get worse in the future mainly in my shoulders. Skateboarding is such a huge part of my life and I truly fear losing it one day because of this but I wont stop even if it makes things worse and even cripples me I will not give up skating. Thank you so much for posting this you are very brave for doing this. You are very brave =)
dark8lion 2 years ago
Tracie!
Thank you for putting your videos there, i think that what you're doing is really brave and really important.
Wish you all my best, you're a strong and beautiful woman!
Don't give up!
Take Care
AnneSolacrevette 2 years ago
Hello Tracy ,
My name is Patti .. Im sorry to hear of your condition .. My son Nicholas passed away from a connective tissue disorder called Juvinile dermatomiositis.. .. Hang in there dont ever give up.. You are one awesome young lady .. Peace ..
missrepo 2 years ago
Hi Tracie you have done an excellent job of telling us about your illness.And you are so right people are un real and they should be more nicer to people in general and people with disabilities.I pray that your pain goes away and I thank you so much for making me aware of what you are going thru.Bless you my dear and I pray that you get everything that you and your family needs.Please take care Hugs:)
HoustonQueen10 2 years ago
Will (fatherbigley) also shared your video with me.. I wish you all the best and pray you have the strength and courage to get through this. God bless you and be with you Sweetie! Hugs xxx
haykym 2 years ago
It is a pleasure to meet you. Will (fatherbigley) sent me your video. You are such a strong woman. Thank you for sharing your story. Much love to you!
usafireandrescue 2 years ago
I have type 3 EDS i am 14 years old and thanks for putting this up. I feel so alone sometimes. Doctors didn't know why i was breaking things and spraining things for no reason. I am in a wheel chair in school. . . It is very hard, its my first year of high school and I am always being asked "what happened?" because i used to be walking and doing everything just fine. Please raise awareness!!! The more people know, the better chance of finding a cure!
aLittleBitLonger0095 2 years ago
You're strong, girl. Thank you for your video. You are loved and respected.
margellini 2 years ago
Hi I have type 3 eds like you. I have hypermobility in my joints I cant do the shoulder trick or the hips mine is in my knees and feet with dislocations. I have been made fun of for my condition lots over the years and the thing is I can do alot of things "normal" ppl cant. I take a steady diet of vitamins and I take pure collengen pills helps LOTS with pain. you have to stay active and strengthen your joints as best as you can for me my whole life has been mind over matter and Im still here;)
mrgiggles10 2 years ago 2
Much strength to you throughout your life...
ItalianLessons101 2 years ago
I favorited this. I hope more people see it.
- TAE
TheAnimationEmpire 2 years ago
Thanks for the video-I don't know if 'we" have this-but "we" my kids and I and family on my mother's side seem to have many of these issues. Now-if people give you and others 'dirty looks" it is THEIR SHAME. I know you and everyone else would give ANYTHING to be well-people who have no empathy are the SICK Ones! Love and God's Blessings to you all...
dragonesse91 2 years ago
How do you like your device for mobility? do you have silver rings splints? to support your fingers if not I highly recommend that you look into them if you need direction let me know. I have been wearing mine since 200 24/7 and can't live without at least my right pointer finger and thumb supported. Who is your doctor? did you see Dr. Elizabeth Petty at U of M? She is supposed to be taking an interest in EDS and should be up to date with EDS findings. Personally I didn't care for her LOL
rprimeau95 2 years ago
Hello I am 39yrs old mom to 5 children 4 with diagnosis of EDS Classical type I. My oldest is questionable I believe he has it based on symptoms he just doesn't have the stretchy soft skin they doctors are conditioned to look for. Do you have Hypermobility type? Since Dec 08 when my daughter was 11.5yrs old she started showing signs/symptoms of POTS "Postural Tachycardia Syndrome" she is now 12. It took me 30yrs before I got diagnosed here we go again trying to get POTS diagnosis. We are in MI
rprimeau95 2 years ago
This really touched me. You are a very strong person and you have all of my prayers and support. Thank you for sharing your story. Hugs.
JulieMorisot1885 2 years ago
My son has EDS he is 4yrs old one of his hips is dislocated, one of his knew bends when is standing because it is too flexible and just because he doesnt walk normal, people stare and it bothers me that they look at him different , alot of parents will even assume their kids are smarter than him just because of the way he walks and his condition . I know exactly how u feel about it .
marthamoreno6628 2 years ago
Thank you for posting this. I feel and sense your pain. I too have Ehlers-Danlos hypermobility type. I was diagnosed w/ this first then went on to be diagnosed w/ lupus as well. It's awful to be so young and look so normal and be in so much pain. Hang in there. You are not alone.
nomordumeez 2 years ago
Your so nice
I have scoliosis and hypermobility
Thanks for explaining your condition
PinkCandyBabe01 2 years ago
This actually brought tears to my eyes. I know what it's like to have a condition that you have no choice but to live with. And the very fact that you've made this Incredible video just goes to show that you are Living with your disability with Tremendous Courage and Strength. Please Stay Strong, and know that no matter what anyone else thinks of you or your disability, You are an absolute Angel. My thoughts and prayers will always be with you ~ Ru :) xoxo
Ru01202009 2 years ago
Sweetheart, there is a cure for all of this.
You're really barve and amazing for making this vid, i hope maybe someday you can get better. Stay strong, my friend. There are many people stay beside you, encouraging you.
you hav my support ;)
imBowJB1 2 years ago
all you've got to do is to be strong.... don't think whatever people think of you.... some might look pity, some might look hatred.... stay strong, be positive and I know you can do it..... my friend Will, sent this video and I will share with all my friends too.... and my thoughts and prayer will always stay with you.... take care :)
highsky22 2 years ago
i am 13 and in a wheelchair and its not embarresing to me? it just hurts..i would figure a walker being way more embarresing but i see stare all the time so i give them dirty look or flip them off that helps...i feel for you tho,,, keep fighting hun
PastryPanic0506 2 years ago
I came Across you video & as I watched it, I Could Feel & Understand The Heartache & Pain That You Go Through. What Also Touched Me Was When U Said, People With Disabilitys are Normal Too & That Others Shoudln't Stare. I Agree With You So Much!!! Just Because 1 Needs To Use a Chair/Walker/Cane, Doesn't Give Any1 The Right To Stare & Judge. Its Hard Enough Enduring Without The Ignorance Of Others. You Are a WONDERFUL Brave Angel & May God Richly Bless You. Thank You For Sharing This With Us. HUG!
DarkRuby22 2 years ago
This has been flagged as spam show
(: never give up (:
electricguitar95 2 years ago
This comment has received too many negative votes show
pull the plug..my dear..
zadzircon 2 years ago
I have type 3 EDS; it's difficult to live with as well.
I think you are a very strong person and society can't hold us back.
Glitchfacade 2 years ago
While I was watching this vid all I was thinking it's how you're better than a lot of people I know. You're so much better, so much sweet and kind. And I think you're normal. Actually you're more than normal. You're better than simply normal. You're an angel.
Just enjoy your medicine(heavy metal) and try not to care about the others. They are staring at your beauty!
RachN10 2 years ago
your beautiful!
Tammi0 2 years ago
You are a beautiful women. Stay Strong.
TexasBandit9 2 years ago
Stay strong. My heart goes out to you.
So many people in this world are lame and take life for granted or think only of themselves. Many might hurt your feelings but remember many out there have you in their prayers.
guitarzero 2 years ago
Stay strong. My heart goes out to you.
guitarzero 2 years ago
I had suffered a dislocated shoulder a couple times--once during sex. Not fun.
phrydoom 2 years ago 6
@phrydoom This bitch is dead, she died months ago.
danthehempsmog 2 months ago
@phrydoom rockerchik76 dislocates everytime she engaged in sexual acts with her husband. Acording to him it was like fucking a puppet.
danthehempsmog 1 month ago
you are a beautiful person.
kentstrongtommy 2 years ago
never give up child of god
your sweet
NickelbackIsSexy 2 years ago
I am really touched by your video and brought to tears. You're very brave and smart for bringing awareness to this. I have painful TMJ and have been diagnosed with hypermobility, usually they come hand in hand. I am looking into EDS because I think that I have a minor form of is, as now I've a heart murmur and carpel tunnel syndrome. I'll pray for the both of us!!!!!! Keep it up girl, I respect you so much.
morganstubie 2 years ago 2
God will Bless you.... also I prey for you..
Thanks...
ExplosionMetal 2 years ago 2
GOD Bless you, Im sorry about your pain, is there anything outside of chemicals to treat this or cure it? You dont older than 21 or 22 :). I wish you the best.
jdigitalseven 2 years ago
A friend of mine sent this video to me. Thank you for sharing your story. I always love hearing people's stories because they are very inspirational and reminds all of us that every day is a gift no matter what conditions we are dealing with in life.
HaleyMary 2 years ago
With Love
With Respect
With Strength
But most importantly...WITH A SMILE!
LR
(K)
loveresurrection 2 years ago
Gratitude, Love and Hope for creating and sharing this video ! Very uplifting and positive message ! As a handi-capable person, myself, with family members who have multiple differently-able conditions, I totally agree with all You 8))))
Thanks for sharing whenyouneedsomeone !
peace and love
Elizabeth
dragonflyslight 2 years ago
Thanks for share whenyouneedsomeone !
Great Video !
Your story is very touching !
I will pray for You !
Tadek59 2 years ago
I want to thank whenyouneedsomeone for sharing this.
While I will not take pity on you (most people with illnesses don't want to be pitied), I will tell you that I am sorry for the condition that you have and I hope that your trip to UM is an eventful one.
I do hope with continuing research and developments that a cure can be found.
Those morons that stare or make faces, do not pay them any attention as we should "ignore" those that are ignorant.
5***** and thanks!
Indy
1975Pontiac 2 years ago
Nice eye opener for us all.
You did this video very well and you could be the ambassador of awareness.
I know it hurts and I try to prevent it but sometimes I noticed I looked 1/10 of a sec too long and then felt bad.
I want to apologise for that.
metalmarkholland 2 years ago
5stars for awareness raising by making this video. I am familiar with it but it is hard to explain and you did a great job. I want you to know if you do not already that there is an eilhers danlos association also. They are quite wonderful. peace and love and you are a beautiful gorgeous lady. :-)!
Therapist1972 2 years ago
I want you to know that I am 38 and have suffered from severe arthritis and mitral valve prolapse since I was 16 years old. I completely understand what it is like living in pain daily, having to deal with doctors, medications, depression, and everything else that comes along with a condition such as yours and mine.
HeathersArk 2 years ago
We are normal, there will be things that you can't do any longer but you will find things you can do better than most. I took up knitting and love it, great mobility exercise for the hands. You will find your place in the world it may just be different from what path you thought you were on. :D
HeathersArk 2 years ago
By the way a friend (Fatherbigley) forwarded me your video and I don't even think he realized that I too suffer from a mobility disorder and heart condition. If you ever need to chat just send me a PM, I'm sending you an invite so you can comment on my page or send PM's since I have a friends lock.
HeathersArk 2 years ago
Sorry to hear about your condition. You are so right. It;s difficult for people to understand if a person doesn't look ill, one really can be !! Take care ! A.D. :)) thank you for sharing Jolanda
4DRY4N 2 years ago
U r normal. U just have different needs. God bless u. My prayers r with u. U r beautiful.
xoxBooBearxox 2 years ago
Oh like the Sally character... ;(
I can only imagine what you must be going through. The only thing I can offer you are my prayers and my love. I wish I had more to give you. God bless you and your family. Eve ;)
EveAngela 2 years ago
Hello my dear.. your story is very touching and heartfelt.. I hope all is going well. I favorite the video for more of my viewer show interested in ur message to others.. last Shout out to Will on youtube.
ur in my prayers
Sabrina Brown SMB
SabrinaBrownSMB 2 years ago
Hi Tracey,
you're a brave young lady and i'm feeling with you in your pain.
If you wanna be friends, I sent you an invite. You can always write me on youtube.
Tom :)
TomBroxExanos 2 years ago
wow...i admire your strength & positivity.
your beautiful and sweet.
hang in there..and dont let anything discourage you.
Jesslovesyou2010 2 years ago
Oh Dear i can relate to you so well
I don't have the same disease as you have, mine is called Fybromialgy, i can't excplain it i a few words but i'm in pain also, every day, all day long
I try to cope with it and i think i do pretty well hehe so well that a lot of people don't even see that i have an ilness
You are a very strong woman, not ascing for pitty but just understanding
I hope you understand that if you need to use a wheelchair or whatever do it, don't feel embarresed
whenyouneedsomeone 2 years ago
Please try to keep on thinking positive
I'm sure there are a things that are positive having a disease i hope you will understand what i'm trying to say
I apriciate a lot of things more after i got this disease and i also can understand people that are going through something better
I never judge anyone, because you never know what is going on inside them
Try to apriciate everything, small and big,but i do believe you already do that
Big hug to you and Will who send this video
Jolanda
whenyouneedsomeone 2 years ago
You certainly have my BIG support...
This video was sent to me by my wonderful friend will...am so glad he sent this to me...
Keep strong .. My Prayers are with you girl.....
If people stare at you its because you are a beautiful woman....like rick said, insiad and out!!!
so proud of you to make this video...
Lots of Love
laney xx
ThreeTimesaLaney 2 years ago
You're a really Beautiful Person.I Admire Your Courage dealing with such an Illness and I Wish You and Your Daughter Luck in Life
fatherbigley 2 years ago
Thanks for sharing this with me....and I agree, you are a beautiful person inside and out. I wish you all of the best, and you definitely have my support :)
xo
Kat
KatCraigMusic 2 years ago
May I give you a little advice? When you notice the whispers or the bad looks - just answer with a smile. I know it hurts but they are not worth your tears... You are wonderful. All the best.. Diana :)
Surfi2006 2 years ago
Hey.. I admire your strength. You seem to be such a beautiful person in and out and for the pain you have to bear day by day you really have all my respect. Thanks for telling your story, I was sent to your video and I'm so glad that I clicked on your video, You're a SuperWoman in my eyes...
Surfi2006 2 years ago
Thanks for revealing your situation and you sure are beautiful inside and out! Thanks Rick
Pinchysandcrab 2 years ago
your hot so wat make em look at ure face before ure walker
Rifter09 2 years ago
ya
you keep it up and hang in there :)
jakestad 2 years ago
Im so impressed of you girlie, and even if I dont need a walker i can understand you 100%... Like Dustin said... Hang in there... The important thing is to accept the situation, you cant change it, just make the best of it!
Love ya girlie! Beeesosss from Sarastra!
Abigail7thofJuli1777 2 years ago
I LOVE THIS GIRL
INTELIGENCIA666 2 years ago 2
thanks for putting this up. You got a lot of ignorant people on here (like me) who don't know anything about anything...
bubbaclem24 2 years ago
hey there, i"m a dc area comedian with EDS. Hang in there and if you ever need a good laugh check out my video. :-)
DustinWoodComedy 2 years ago
Looks like they all agree with me
Dustyrocker77 2 years ago
I'm sorry but i have to say it your beautiful
I'm sorry
ichigovizard14 2 years ago 6
she is.
pkrwd 2 years ago
why be sorry? she is a beautiful person! Hi tracie.
pkrwd 2 years ago
Hi Joey and thank you sweetie!!
rockerchik76 2 years ago
Thanks for posting this video... Wow, so very brave of you. I have been dealing with EDS since I was a little kid. Are you on facebook, maybe we can have private chat... again, thanks
lilterp2002 2 years ago
this is my yt sis and i love her like a real sister mess with her and you will deal with me got it!!!!
shes the best!!
heavensangelz1 2 years ago
ill always be here for you sis.
anyone messes with you you tell me and i will whipp ass!
love you always!
LovelessWoman711 2 years ago
i think its awesome that you have put this up, a lot of people sit around when they disorders or diseases and sit ashamed of themselves for having it, i think you should be proud of yourself for putting this out there, i agree with extremerecording, i dont think you should view yourself as different, you are a normal person, a normal person with different circumstances, you are a strong person who deserves recognition for what you deal with on a daily basis.
rob
abadonae 2 years ago 2
your pretty good looking
i hope this disease doesn't affect you in the long run
Cheesehunk 2 years ago
Hi.
pkrwd 2 years ago
Hugss to you!!!!!You like the Bears?
mindfulmusic78 2 years ago
Sweetheart, there is a cure for all of this. It will be given to you, but the way to get it is to change your view of yourself. This could take a few years of practice but you have to stop seeing yourself as challenged and see yourself as whole. Also you would need to find out what it is that is making you feel subconsciously comfortable with the disorder. If you are able to get through the layers, you will lose the pain. Talk to Terry Cole Whittaker. She will show you.
extremerecording 2 years ago
i'm also 32 and live in pain everyday. i had a spinal fusion that made things worse instead of better. that along with severe nerve damage in my legs forces me to use a cane. i feel for you and hope things get better and easier for you.
tatrgd 2 years ago
i have congenital dissorder and peopel woudl pick on me
because my elbows looked different to most people
which was upsetting
i hope your okay
i really feel sorry for you
and can sort of sympathize
cause peopel need to understand
that ist not a laughing matter and it does hurt
what people say, i wnet an entire year being hurt by peoples abuse cause my arm was some what angled like a right turn arow and people would call me banana rm and such its upsetting but ppl are stupid :(
BeautyBreeBear 2 years ago
ppl can b cruel but dont listen to what they say your brave and i hope all goes well with you and that one day they will find a cure or something to help you with the pain
jackdup1500 2 years ago
you are normal like everyone else, everyone that tells you otherwise are just complete a**holes
gir12121 2 years ago
You totally have my support.
You explained really GOOD! People really should start respecting people.! :)
One of my best friends have this and when im walking with her through the mall people do stare!
It makes me really sad how people can be that hurful.
No one deserves this.
I think your really strong for just putting this video up. & Brave!
Hope you get better very soon. :)
KaylaWonderland 2 years ago
WOW i really hope you get better one day i faved this video
U r very brave :)
BFF5687 2 years ago
you are really brave and amazing for making this video, i definitely will think different about this.
i hope that maybe someday you can get better or stronger from it and aren't in constant pain, but if not your a completely normal person. [:
you have my support.
JayWonderland 2 years ago
Keep strong,hope you get better and that they find a cure for it.
forus67 2 years ago
whats it like when having sex?
Vampurrhyii 2 years ago
why would you ask her that? that is just mean
GPErik94 2 years ago
I hope they can make a cure or at least a treatment for it. I wish you the best of luck.
evilclown777 2 years ago
thanks so much for sharing with us!
hastingsmusicusa 2 years ago
I hate it when people say "OMG YOU ARE AN INSPIRATION!" or "OMG I'M SO SORRY!" or constantly badger disabled people to "help" them with everything.
It drives me absolutely insane. I wish these people would think if they would want it, if they were in that position.
m0ufin 2 years ago
i cant even imagine how bad thats gotta suck.
but the thumb-thing? is that really connected to a disease? i can crack my left thumb out of joint in a very disgudting manner. and im healthy (enough).
chin up. its all you can do really.
yashatono 2 years ago
Aw sweetheart! You are such a beauty!
I would take care of you!
If anyone gives you crap give 'em the finger!
GregoryWalls 2 years ago
This has been flagged as spam show
id fuck her
wsedawd2e 2 years ago
omg ur pretty
wotsits1992 2 years ago
You're completely normal to me. But you're also a lot stronger than I would probably be. You're an inspiration.
DarkLazer 2 years ago
I wish you the best... from Brazil!
defensormaldito 2 years ago
yeah! Im brazilian too and you are awesome =]
keep your chin up!
demonofdarkness19 2 years ago
wow....that must be really tough to live with
DealinTy 2 years ago
Closing in on 3000 views. Maybe this will help people to take notice, and understand what others go through. And maybe in the end raise awareness and cause someone to start the research that could end up curing this for people down the road.
Zorlac0666 2 years ago
It must be very frustrating being in pain all the time. Oh my oh my. You seem like a very nice girl... All good luck girl!
Kamalood 2 years ago
omg im so sorry :( i don't think i would ever be able to feel your pain, but for a complete stranger you completely reached out to me, which is a really big achievement , i completely understand and no matter what your completely normal :) here for u. J x
1201309 2 years ago
ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh that looks painful
ForMotherRussia135 2 years ago
I have the same cologen thing with the stretchy skin. But not the hyper flex although I am double jointed. I do have other medical issues, I think everyone has there issues its just you can't always see them. Thanks for sharing
RichieVibeVee 2 years ago
Awwh. =(
Btw, your hair is gorgeous.. =D
MollyMassacree 2 years ago
i agree.
JakNapier23 2 years ago
The world needs to see that we all are humans on the inside, no matter how we seem to be on the physical outside.
I learned this because i grew up kind of lonely and socially handicapped.
You make a difference when posting videos such as this one. You seem to be nice, and that is the most important trait anyone can have. I hope that people will listen to you and understand this! :)
*Smiles at you*, all the way from Sweden ;)
//Andreas
andreasbeaver 2 years ago
AAAAHHHHH!!!! Oh my god. Sorry the bone dislocation part made me wanna vomit. I hope you can get something that can cure that or something. That sucks. Good luck.
idiotstomperelite 2 years ago
Wooooh!! Go mom! xD
MonikaLoren 2 years ago 2
People give you dirty looks for using a walker or a wheelchair? Crikey... what kind of assholian society do we live in?
triskalguilo 2 years ago
You look a bit like Avril Lavigne.
RemusRomulus360 2 years ago 2
Don't even worry about these people that want PROOF. The information you gave was specific, and no, you never sounded like you were "asking for help" about a single thing.
For the people that don't get this, this was a video meant to help OTHER people that might be going through struggles and to inform people that don't know about this. You should be thanking her.
Bookster343 2 years ago
This comment has received too many negative votes show
*sigh* another "help" video? yeah, im gonna need some proff to believe u got EDS, make a vid of u actually USING the walker
IChidoriI 2 years ago
Shut The Hell Up Man She Is An Amazing Individual She Does Have EDS Ive Been Speaking To Her Shes Amazing!! Y The Hell Wood You Want her To Put A Vid Of Her Using A Walker Are U Mentally Disturbed Or Something???
Just Leave Her Alone Shes Going Through Alot Man Just Leave Her Alone or Be Nice! Y Do You Watch These Vids If Your Gonna Say That Youve Obvs Watched others coz u sed another help video man its just rong if u do this on videos like this shes an amazing person so leave her alone
Doaboii 2 years ago
*Sigh* Another know-it-all YouTube kid that thinks a single comment will spur the response of the one that had the GUTS to actually MAKE a video in the first place. Really, do you think she would go through the effort of making a video and putting her face up for the world to see, all for attention from anonymous people on the internet? She seems very confident in herself, so NO.
And what does "proff" mean, smart guy? check your grammar before you attempt to sound like you know shit.
Bookster343 2 years ago 3
Need some proof....Are you extremely dumb or just plain stupid.
You ignorant fool.
shame on you!!
remedy5678 2 years ago 2
Kudos to you for throwing this out there. You are one strong individual. I admire your courage. I am subscribing so I can stay updated on your status. I have to say, you surprised me the most when you said your age. Stay strong, and be well. I believe God is going to do a great work in your life, and I will pray that he keeps you strong, and blesses you for your courage. Things seem to be more difficult than is just, but hang in there!
TasceDakari 2 years ago 2
Hey rockerchick just want to say that you are a beautiful girl and dont need to pay atention what others say about you.Stay with your true friends and like the other guy/girl said keep your chin up.
Greetings from Brazil
;)
leennely 2 years ago
I really don't understand what's up, for me is hard to understand the spoken english
iBiomega 2 years ago
it must have taken a lot of courage to make this video. i admire how brave you are living with this.
its people like you that bring a tear to my eye, you don't deserve this.
FireFuseFox 2 years ago
I wish and pray you get better, keep your chin up and good luck!!!
HightowerRaze08 2 years ago