@chrismanlol00 seriously? That is probably one of the rudest things anyone has ever said. I have EDS typre 4 or vascular. I have things dislocate constantly and believe me when i say I obviously wouldnt choose to have my joints dislocate and I'm sure anyone else with EDS would agree. Would you say something like that to someone who has cancer? No I didnt think you would.
I have EDS but the only things I've ever dislocated was my elbows and finger (that i put back my finger myself). I was misdiagnosed when i was a child so when i popped my right arm (radial head) I didn't even know what happened. So I'm stuck with it still dislocated even now after 2 1/2 years. It is very tough to handle and I'm in pain more times than I can count but I refuse to give up on living just because I have it. My hypermobility isn't that much.
@chrisman it must be a lie because you have some friends who have never had this symptom? How ludicrous! How about "They have different experiences of the same condition"? I have friends who are diabetic who have both their feet, you wanna tell me anyone who has lost a foot with diabetes is just a liar? Idiot.
I have EDS severely... and yes... its true... even having sex can be difficult! having those hips dislocate everytime you try! it gets exhausting! you literally wake up and have to relocate everything! i am putting my shoulders back in twenty times a day, my hips 15 or so, my ankles and wrists non stop... hell even my ribs pop! i use a wheelchair as my hips wont stay in place at all when i bear any weight on them.... its a horrible disease!
I'm hypermobile and get subluxations all the time. Only dislocated a joint thrice, but injure my ligaments a lot. I haven't pursued an EDS diagnosis yet, as it's possible I have benign hypermobile joint syndrome instead. Trying to keep my body as strong as possible.
1st, all of this is a lie :) I have 12 friends that have EDS, they NEVER have joint dislocation, but they have stretchy skin. Its funny because this viedo is a lie. You need to fucking learn how to NOT dislocate jesus christ _-_ I love hanging out with them because it is SOOO cool to stretch there skin Ehlers-Danlos syndrome is a group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels
@chrismanlol00 you're an idiot. First off, you don't have 12 friends with EDS. I have it and my cousin has it and those are the only two people I've known personally throughout my life. It's a pretty rare genetic disorder and the odds of the majority of your social circle having the disorder are slim to none. Second of all there are a "group" of inherited disorders, that "group" being all different types. One has more effect on joints, and you don't just "learn how to NOT dislocate jesus christ"
I have this condition. Ehlers-Danlos Syndrome, Hyper Mobility type. This is really painful and it really sucks. I am glad there is a video to aware others of this condition.
@1990ccoleman Dislocations and subluxations (partial dislocations) that are recurrent and acute are one symptom of H-EDS - Ehlers Danlos Syndrome, Hypermobility type. There are about almost two hand fulls of types. if you go to facebook and search zebras for life, request to join, and you can learn about it from all the members there... zebras for life facebook group is for anyone with or may have EDS, Chiari, Dysautonomia, POTS, Fibro, and etc.
@1990ccoleman zebras for life have many doctors, who will not diagnose you, but could give personal advice and also we have attorneys and at least 1 director of the board of directors for the ehlers-danlos national foundation... :)
Hi, thanks for the information. I will be certain to join the group :)
I've already been diagnosed and I am undergoing physiotherapy. I have other symptoms too (fatigue, joint pain, hypermobility) but the dislocations are the worst. I am lucky because, after watching this, I realise I must have a less severe case of EDS. The physio has been going well. My legs (particularly my right one) have been displacing less frequently.
@peterhejlejensen These wonderful people married each other AFTER both of their spouses left them because of their condition. The loving mother did not know she had EDS at the time she had her children. Alberto is a special man to bring this wonderful woman and her children into his life. 90% of us are NEVER diagnosed. It is not uncommon to be diagnosed after having a family. They are facing head-on, with courage their difficult journey.
My mom has Ehlers danlos. Her skin is more affected than her joints. She has hyper mobility but her joints do not dislocate. This is such a strange disorder. My mom had 2 children. Me and my brother. I am happy to say that we do not have Ehlers danlos. I can move my fingers in odd ways but NOTHING like someone who has ehlers danlos and I do not bruise easily or dislocate or injur myself! Thank GOD!!!!! God bless everyone who has Ehlers Danlos. I hope things can get better
I'm 20, and I got diagnosed with EDS Type 3 when I was 12 years old. At first they thought I had Rheumatoid Arthritis. Now I use crutches and different aids around my home. I made some EDS videos on my channel for ways and means for coping.
I agree with everything they say.. I wish I could have someone I knew personally that I could talk to. No teenage friend wants to listen to medical talk.
I have this. Sometimes I just wonder why me? What I did to deserve all the pain I go in EVERYDAY. I feel like nobody really understands me well... It sucks..
I've dislocated my ankle by just sitting up in bed. I also can't walk my dogs anymore because they dislocate my elbows. I'm only 18. I just recently got diagnosed with EDS 3. I have been sick for 3 1/2 years and the doctors at Mayo Clinic and UCLA couldn't figure it out. I was watching a medical show when I came across someone with Marfan's. I thought I had some of the symptoms so I researched it and I came across EDS. I went to my doctor and he said I tested positive for EDS 3.
i've got this too its a fuckin pain in the arse i'm on crutches and have been for a year now my EDS means my joints come out and get stuck meanin for a year both of my shoulders and right hip have been out =( any tips on how to stop fingers going whilst usin crutches ?? xxxx
I suffer from a crippling malady as well; it was serendipitously catching this short piece that gave me the courage to stop just reading about kendo, master my fears, and go to the dojo.
Is there any pain management regimens that help with this? I am 23 years old and have EDS type 3. I feel like an old woman, always in pain. I sometimes use a cane to get around, but the way people stare (since I don't look sick) makes me feel like just not going out.
I'm sorry, I'm 17. I have EDS 3 and I walk with a cane and am starting to need a wheelchair because of how my joints are getting. We EDSers need to stay together because not many people get us.
A lady at the wheelchair place was trying to make it so I didn't get the wheelchair I need, sticking me with one that will dislocate my shoulders. lol. So this time I'm getting an even more specific prescription.
I just ended a journey to find out what was wrong with me. I've been told I'm crazy and its all in my head, but I was right. I now know the answer and have to cope with EDS. I want to educate others on the disorder, so people do not have to live in pain without answers any longer.
Follow me on my blog, I just started it the other day and hope to make a change! Its on my journey with chronic pain, but I like to take a light heart to it...
watching this family be up and around doing martial arts I do not think is a realist view of EDS, I spontanitously dislocate about 30 times an hour just in my shoulders, and get bed ridden for weeks at a time and after attending the national conference for the first time last month I saw I was not a small minority. The pt specialists there say it ussually takes 6 months before you stop moving back in pt and a year before you see progress, we are not generally a spry group.
imy knee had been dislocating for 3 almost 4 years know its dilocated and went back in by itself probably around 32 times and i have had to put it back in about 8 and now im having problems with my shoulder and wrist...my PT said i def. have hypermobility...and also i have a chronic pain disease and a lot of people who have this chronic pain disease i have also have this...does anyone know if i could have this?
This video is really helpful, but doesn't go into the various types of EDS. Vascular can be fatal, which is important to realise. If some people are displaying symptoms of EDS (Beigton Scale of 4 or above, easy bruising, soft and stretchy skin, no reaction to local anesthetic, bowel troubles, chronic pain [perhaps not all present, but to name a few]) it is very important to push for a professional to check this condition. Pain should not rule one's life!!
I have been diagnosed with Joint Hypermobility Syndrome and am looking into the possibility that it maybe EDS Hypermobility Type III. This was one of the most informative videos I've seen so far, especially showing how people live with EDS.
@searchingforstable It is believed across the board that Joint Hypermobility and EDS III are one and the same. That is what I was told at the EDS clinic last month when I got my diagnosis- my letter outlining the consultation says both 'EDS Type III' and 'Benign Joint Hypermobility'.
It could be worth looking at one of the EDS specific forums online for more about this. :)
i'm 19 and i have a mild form of EDS and it does hurt to stand and walk for long periods of time. i've dislocated almost every major joint in my body. the pain from these dislocations has further intensified the pain. But I've learned to keep myself from doing activities that might lead to a dislocation. I've not had a dislacation for a few months now since i've started strength training and using braces on my knees. Just my story
@dacksoldier Dosent sound like you have a mild version of eds to me if your dislocating all the time, im hypermobile but dont dislocate maybe cause ive always kept my body strong but i get ligament injuries all the time.
I saw this family's story several months ago and still think of them quite often. I've added my family's story in hopes that viewers of either video may realize that there are so many of us out ther living with this - and that hopefully we can increase awareness and understanding. Best to all of you!!
I was diagnosed with this in October. It's really hard to be a teenager and have this. I can't run and play sports with my friends, kids call me lazy because I can't participate in gym, can't walk up the stairs at school without falling and hurting myself. It sucks.
there is more than one type of EDS, and it doesnt have to be as severe as this-- it will progress, if you do have it, but truly you should still look into it.
They knew I had hypotonia since I was 3; Later a smart doctor found it was EDS. Luckily, not vascular. 24 hour pain and no can see or tell you are in pain. I used to always due tricks for my friends and family but sometimes the shoulder dislocations were a bit much like the one i experienced smashing a volleyball 5 years ago. These people have it worse but now my whole body is oste-oarthritic. The neck being the worst. This family is amazing. Everyone has it! Rare, like 1-15,000.
i'm so sorry. I had an echo-cardiogram a moth or so ago which came out normal. My mother was finally diagnosed with ehlers danlos. a great gynecological surgeon who studied at Mayo clinic just knew she had it. I got it ftom her but all she thought she had was fibromyalgia and arthritis. Difficulty is that joint disease specialists don't like to take insurance.
They are really brave...but I wish there was a way to control your genes to be able to put the ones together which dont have the disease and have healthy children.....
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my ffriend has this thing he a bitch about it he ask me to grab him a pencil that like 1 cm away from him and im like 1 meter im like more your god dam finger!
i have classical eds. i dislocate my hips about 10 times a day, and i'm only 14. i use my disease to my advantage though, i am a dancer and i can do oversplits to 190 degrees, and stretch in many ways that my classmates can't. i have very strong legs from dancing so my knees are ok but i have to be very careful.
No. The doctors think that I have a very mild form of EDS (hypermobility), but haven't been tested - couldn't be bothered. I have no real pain or problems with dislocations. Have a look at the Wikipedia article on it for a good overview.
Seriously go fuck yourself you fuck, truth is you probably wont go half as far in life as these people, regardless of having the gift of a strong body.
My son and i have ehlers-danlos syndrome type IV ( vascular) except my son has EDS IV with cleft lip and palate and marfanoid symptoms. His skin looks 90 year old and as thin as a rake. Its a horrible thing to have. I would not wish this on my worst enemy.
I found out that I had EDS last year. I severely dislocated my knee by taking a step to my left. I just had knee surgery on February 10, and I still can't walk. EDS is not fun.
i have EDS and we are actually encouraged to lift weights to build muscle to help support our joints. heavy weights? prolly not...there can still be problems with working out and EDS, ive subluxed many joints doing free weight excercises before. but with EDS suluxations (partial disslocations) are just a part of life
running is hard because it is really difficult on the knees. instead low impact exercise such a water sports or using elliptical machines instead of running is recommended.
My neck gets subluxed (partially dislocated) daily. I have to reset it and the middle of my spine several times a day without fail. I have accidently nearly fully dislocated my neck before by accident- if you do that you will faint I've found. My neck is the most painful part of my body. My mother had to have the bones in her neck surgically fuzed together because of the EDS subluxations, it simply wouldn't stay in place anymore.
My wife has eds IV.Didnt hit her till she was thirty,she cant hardly get out of bed.The Truth-Getting fucked wherever you turn.insurance doesent cover half the meds,No social security waited to long to file, only s.s.i.600.00 a month if no one else works,went to job family service for help they told me to file fmla at work, got fired,no insurance will cover(pre existing)4 kids,all have it,now im losing my house,so FTW I fucking hate eds,have to get divorced so i can work or we lose ssi,medicade
I have EDS as well. I have severe hypermobility, and have had a lot of dislocations. I have 4 children, and 3 of them are probable for having it, one has been diagnosed.
i have type 3 too and i'm only 15. my body dislocated more than you could imagine. I sleep the entire night with my shoulders dislocate, when someone shakes my hand, my writs dislocates, my jaw dislocates when i eat...i dislocate more than 150 times a day. let me tell you, its not fun!
I have EDS IV, have lived in a wheel chair at some points of my life, and have knee replacements, shoulder replacements, and am heavily medicated. Thank God my parents didn't know that I'd be this way, or else I'd never have forgiven them for not taking precautions. These are the most irresponsible parents on the planet, and I can't image who would be selfish enough to "hope" their children wouldn't have EDS. When a person has this condition they should take precautions not to reproduce.
If any of you who have EDS are looking for something other than Opiots to try for controling the pain I have recently been put on a drug called Lyrica. Like everything else it won't stop the pain, but it has dulled mine dramatically. I hope this helps.
My Neurologist asked if I had taken it before and may try me on it soon, Did EMG and said I have nerve damage and Neuropathy then started me on Neurontin. It helps for the pins and needles type of pain, but doesn't help with the sharp pains or acheiness. How long did it take them to find out you had EDS?
I found out when I was 21, Doctors began cutting on me to try and "fix" the hypermobility and cartlege damage when I was 14, began speculating on what was causing it when I was 10 or 11. how long did it take to find out for the rest of you? Does Louisiana just suck at diagnosis, or do more doctors really just not know?
I live in Houston, home of one of the best supposed medical centers in the world.
And I didn't find out until I was 50, and I found out about it first in magazines and on the internet and had to point it out to them.
Once I pointed it out to the doctors and tried to find a Rheumetoid Specialist to confirm it I found out that there is only one in town and he can't fit me in.
I had to settle for a Rheumetologist that doesn't really know what to do about it.
Dr. Mark Reveille is supposed to be the one that everyone else refers thier EDS cases to, But you will have to get a doctor confident enough in thier diagnosis to plead your case and get you a chance to see him.
My doctors are afraid of being considered crazy and not knowing what they are seeing to go the distance and make the call.
They have tested me, know I have it, but like a UFO sighting they do not want to go on the record for anything.
I have to disagree. I think giving away the right to have a biological child is a decision only the parent can make. I understand your point of view if you regret the way you've lived, but if they're just thankful that they are alive, I expect they'll have taught that kind of strength to their children.
Having lived in pain for my entire life I can relate to why a person who has experienced this wishes that no one else suffer the same fate. And although I loved children I never wanted one of my own and frankly I believe deep inside it was natures way of telling me I should not produce offspring because they might have the same life I had. when doctors cannot solve your pain and your spouse wants a child sometimes you might find out too late and really regret what you pass on to your kids.
I agree wholeheartedly, and that is what I am giving, the feelings of a person with this defect and I am relating how it makes you feel about something most people would take for granted like reproduction.
I am happy that my brothers and sister won the genetic lottery, but know it would not be worth the risk of trying to have offspring when you have this affliction and know just how insidious it really is.
But truthfully I am not grateful I am alive and can recall begging for death as a child.
My daughter and I both have a rare cross-over form of both Hypermobile & Vascular EDS, now I can show people this video, and they might understand better what we go through.
i have eds and it is aweful. no one seems to understand. it os hard since im just a kid. i dont have type IV but i have stretchy skin and my joints dislocate. i would love to talk to someone who has it. coinsidentaly my name is carly and i have red hair
I have type III of EDS (hypermobility). I pop out around 15-20 joints every day... on a good day. I'm constantly in a knee or wrist brace, an arm sling, or a wheelchair. It's an EXTREMELY good day if I'm not in any of them. All my life I was told I was making it up... but doctors proved I wasn't ^-^
I just feel so lucky that I don't have type IV (vascular).
i have a verry mild case of what you have i have dislocated my fingers but thats about it but i have all the pain if im not in pain its a wonderful day
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LOL!.at the sex part..wtf will happen..his dick gets dislocated..lol..no offense..to tell you guys the truth tho,I kinda want this too,but not a very severe case of it
No offense man, but you might want to reconsider wanting this syndrome when you can't sleep because you're overwhelmed by pain, constantly on pain killers and dislocating nearly every joint in your body.
Im sorry but fuck off! Its a HORRIBLE condition! Even a mild form of it hurts, just be thankfull of what you have and dont insult people with this shit, it hurts like hell.
whoa..whoa..whoa..clam down yo.You took it the wrong way..I was not insulting in anyway,I just thought it's a pretty cool condition,but now that you mention it I am kinda glad.well anyways,sorry if I have offended you in any way
i have eds too. my case isn't dat bad. my shoulders dislocate frequently but i get used to it after a while and learn to just move my arm in a way that it goes back to a normal position.
I have Ehlers-Danlos Syndrome type 3 and i am in constent pain i can tear ligments and bruise so easiley and i have been ina wheel chair all my life for if i put any presure on my legs hey will brake
yea i have EDS too. it really sucks some days i don't want to get out of bed i am so misreabe. i've been on crutches, in a wheelchair or in a sling literally every other week. i constantly tear ligaments......
I have this too. I saw this episode on TV and said "Oh my god that's me!" I've been tested for so many things, some devasting to hear when you're young and still in school. When i was in Elementary school I was called, "Pretzel" I looked into contortionism for a while and now I just kind of do it to win bets. Seriously though, It impacts every day of your life and always hurts but you learn to appreciate a wicked lot. Thanks
@chrismanlol00 seriously? That is probably one of the rudest things anyone has ever said. I have EDS typre 4 or vascular. I have things dislocate constantly and believe me when i say I obviously wouldnt choose to have my joints dislocate and I'm sure anyone else with EDS would agree. Would you say something like that to someone who has cancer? No I didnt think you would.
prettyinorange127 1 week ago
I have EDS but the only things I've ever dislocated was my elbows and finger (that i put back my finger myself). I was misdiagnosed when i was a child so when i popped my right arm (radial head) I didn't even know what happened. So I'm stuck with it still dislocated even now after 2 1/2 years. It is very tough to handle and I'm in pain more times than I can count but I refuse to give up on living just because I have it. My hypermobility isn't that much.
VampArtemis 1 month ago
@chrisman it must be a lie because you have some friends who have never had this symptom? How ludicrous! How about "They have different experiences of the same condition"? I have friends who are diabetic who have both their feet, you wanna tell me anyone who has lost a foot with diabetes is just a liar? Idiot.
RoseRodent 1 month ago
I have EDS severely... and yes... its true... even having sex can be difficult! having those hips dislocate everytime you try! it gets exhausting! you literally wake up and have to relocate everything! i am putting my shoulders back in twenty times a day, my hips 15 or so, my ankles and wrists non stop... hell even my ribs pop! i use a wheelchair as my hips wont stay in place at all when i bear any weight on them.... its a horrible disease!
Noodlebum87 2 months ago
I'm hypermobile and get subluxations all the time. Only dislocated a joint thrice, but injure my ligaments a lot. I haven't pursued an EDS diagnosis yet, as it's possible I have benign hypermobile joint syndrome instead. Trying to keep my body as strong as possible.
luckypharms 4 months ago
that guy looks like Matt Lauer
Tatertawt24 5 months ago
1st, all of this is a lie :) I have 12 friends that have EDS, they NEVER have joint dislocation, but they have stretchy skin. Its funny because this viedo is a lie. You need to fucking learn how to NOT dislocate jesus christ _-_ I love hanging out with them because it is SOOO cool to stretch there skin Ehlers-Danlos syndrome is a group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels
chrismanlol00 5 months ago
@chrismanlol00 you're an idiot. First off, you don't have 12 friends with EDS. I have it and my cousin has it and those are the only two people I've known personally throughout my life. It's a pretty rare genetic disorder and the odds of the majority of your social circle having the disorder are slim to none. Second of all there are a "group" of inherited disorders, that "group" being all different types. One has more effect on joints, and you don't just "learn how to NOT dislocate jesus christ"
ratchelovexoh 1 month ago
This has been flagged as spam show
i have uploaded an eds awareness video... check it out!
sarabaas 5 months ago
I have this condition. Ehlers-Danlos Syndrome, Hyper Mobility type. This is really painful and it really sucks. I am glad there is a video to aware others of this condition.
sarabaas 6 months ago
@sarabaas
same. it sucks. my leg keeps displacing :(
1990ccoleman 5 months ago
@1990ccoleman Dislocations and subluxations (partial dislocations) that are recurrent and acute are one symptom of H-EDS - Ehlers Danlos Syndrome, Hypermobility type. There are about almost two hand fulls of types. if you go to facebook and search zebras for life, request to join, and you can learn about it from all the members there... zebras for life facebook group is for anyone with or may have EDS, Chiari, Dysautonomia, POTS, Fibro, and etc.
sarabaas 5 months ago
@1990ccoleman zebras for life have many doctors, who will not diagnose you, but could give personal advice and also we have attorneys and at least 1 director of the board of directors for the ehlers-danlos national foundation... :)
sarabaas 5 months ago
@sarabaas
Hi, thanks for the information. I will be certain to join the group :)
I've already been diagnosed and I am undergoing physiotherapy. I have other symptoms too (fatigue, joint pain, hypermobility) but the dislocations are the worst. I am lucky because, after watching this, I realise I must have a less severe case of EDS. The physio has been going well. My legs (particularly my right one) have been displacing less frequently.
1990ccoleman 5 months ago
@sarabaas is there another way to find this on facebook, cuz it brings up sports teams instead o.O and I'm interested in knowing more about this
Desieluv 2 months ago
This is scary to watch!
Vessoland 6 months ago
Why oh why did these very sick people get a child?
peterhejlejensen 7 months ago
@peterhejlejensen These wonderful people married each other AFTER both of their spouses left them because of their condition. The loving mother did not know she had EDS at the time she had her children. Alberto is a special man to bring this wonderful woman and her children into his life. 90% of us are NEVER diagnosed. It is not uncommon to be diagnosed after having a family. They are facing head-on, with courage their difficult journey.
PrettyIll1 5 months ago
that was a cute cat!!
TheDrDaud 7 months ago
This has been flagged as spam show
i am diagnosed with EDS. and everytime i dislocate a joint i experience seizures =(
pamplify 7 months ago
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pamplify 7 months ago
I have this. It's awful.
mayabooba 8 months ago
Do you know of any support groups on eds? My son has been diagnosed recently we are doing everything we can to find out more info. He is 11.
mariepevoto 8 months ago
My mom has Ehlers danlos. Her skin is more affected than her joints. She has hyper mobility but her joints do not dislocate. This is such a strange disorder. My mom had 2 children. Me and my brother. I am happy to say that we do not have Ehlers danlos. I can move my fingers in odd ways but NOTHING like someone who has ehlers danlos and I do not bruise easily or dislocate or injur myself! Thank GOD!!!!! God bless everyone who has Ehlers Danlos. I hope things can get better
AmandaClark77 8 months ago
im 27, with a possibility of type 3. i have tons of injuries, and dislocate a lot. i have posted my taekwondo accomplishments on youtube.
krommann1984 10 months ago in playlist nice0982736647437
I'm 20, and I got diagnosed with EDS Type 3 when I was 12 years old. At first they thought I had Rheumatoid Arthritis. Now I use crutches and different aids around my home. I made some EDS videos on my channel for ways and means for coping.
Us EDSers need to stick together!
kandinsky51 10 months ago
I agree with everything they say.. I wish I could have someone I knew personally that I could talk to. No teenage friend wants to listen to medical talk.
Swimmingmania 1 year ago
I have this. Sometimes I just wonder why me? What I did to deserve all the pain I go in EVERYDAY. I feel like nobody really understands me well... It sucks..
lilyandruby2 1 year ago
I've dislocated my ankle by just sitting up in bed. I also can't walk my dogs anymore because they dislocate my elbows. I'm only 18. I just recently got diagnosed with EDS 3. I have been sick for 3 1/2 years and the doctors at Mayo Clinic and UCLA couldn't figure it out. I was watching a medical show when I came across someone with Marfan's. I thought I had some of the symptoms so I researched it and I came across EDS. I went to my doctor and he said I tested positive for EDS 3.
Wolverineeeeeeee 1 year ago
I knew the wife has some problem at the beginning. Her posture looks weird.
Civsuccess2 1 year ago
she shouldnt have had those children. There are many children to adopt
Troxxity 1 year ago
@Troxxity She had the children from a previous marriage. He didn't have any children with her
guitarobsessed85 1 year ago
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Troxxity 1 year ago
i've got this too its a fuckin pain in the arse i'm on crutches and have been for a year now my EDS means my joints come out and get stuck meanin for a year both of my shoulders and right hip have been out =( any tips on how to stop fingers going whilst usin crutches ?? xxxx
littlealixe 1 year ago
Oh yeah, another Prince fan with EDS! Guess I'm not alone :)
JasmineLeft 1 year ago
I suffer from a crippling malady as well; it was serendipitously catching this short piece that gave me the courage to stop just reading about kendo, master my fears, and go to the dojo.
PlutoInLove 1 year ago
Check out my channel, I give some tips that might be helpful. :)
ufo8mykat 1 year ago
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Mexxi0 1 year ago
This is like living in a constant state of fear from your own body!
I can't begin to imagine living with it every day
unap16 1 year ago
@unap16 I have EDS. Trust me... it's not fun. :-/
KirstenElizabeth613 1 year ago
Is there any pain management regimens that help with this? I am 23 years old and have EDS type 3. I feel like an old woman, always in pain. I sometimes use a cane to get around, but the way people stare (since I don't look sick) makes me feel like just not going out.
LivingWithEDS 1 year ago
@LivingWithEDS
I'm sorry, I'm 17. I have EDS 3 and I walk with a cane and am starting to need a wheelchair because of how my joints are getting. We EDSers need to stay together because not many people get us.
A lady at the wheelchair place was trying to make it so I didn't get the wheelchair I need, sticking me with one that will dislocate my shoulders. lol. So this time I'm getting an even more specific prescription.
MCRdarkfaerie 1 year ago
I just ended a journey to find out what was wrong with me. I've been told I'm crazy and its all in my head, but I was right. I now know the answer and have to cope with EDS. I want to educate others on the disorder, so people do not have to live in pain without answers any longer.
Follow me on my blog, I just started it the other day and hope to make a change! Its on my journey with chronic pain, but I like to take a light heart to it...
On Blogger.com website
edsshegetitfromhermomma
Shegetitfromhermomma 1 year ago
watching this family be up and around doing martial arts I do not think is a realist view of EDS, I spontanitously dislocate about 30 times an hour just in my shoulders, and get bed ridden for weeks at a time and after attending the national conference for the first time last month I saw I was not a small minority. The pt specialists there say it ussually takes 6 months before you stop moving back in pt and a year before you see progress, we are not generally a spry group.
fightingeds 1 year ago
imy knee had been dislocating for 3 almost 4 years know its dilocated and went back in by itself probably around 32 times and i have had to put it back in about 8 and now im having problems with my shoulder and wrist...my PT said i def. have hypermobility...and also i have a chronic pain disease and a lot of people who have this chronic pain disease i have also have this...does anyone know if i could have this?
atvchick09 1 year ago
This video is really helpful, but doesn't go into the various types of EDS. Vascular can be fatal, which is important to realise. If some people are displaying symptoms of EDS (Beigton Scale of 4 or above, easy bruising, soft and stretchy skin, no reaction to local anesthetic, bowel troubles, chronic pain [perhaps not all present, but to name a few]) it is very important to push for a professional to check this condition. Pain should not rule one's life!!
miliamince 1 year ago
my skin is worse than my bones, i have my heart prolapse, im getting that fixed, my worse area for dislocation is my shoulder, ankle and knee's.
xBLuRxGINGx 1 year ago
wow that guy who has this that is a martial arts champion. Kudos to him! He definitely isn't taking this without a fight, no pun intended.
softlyserenademe 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
i have this conditon it sooo helped me!
pinkpprincess19 1 year ago
Awww, what a cute kid:)
CCecilia101 1 year ago
I have been diagnosed with Joint Hypermobility Syndrome and am looking into the possibility that it maybe EDS Hypermobility Type III. This was one of the most informative videos I've seen so far, especially showing how people live with EDS.
searchingforstable 1 year ago
@searchingforstable It is believed across the board that Joint Hypermobility and EDS III are one and the same. That is what I was told at the EDS clinic last month when I got my diagnosis- my letter outlining the consultation says both 'EDS Type III' and 'Benign Joint Hypermobility'.
It could be worth looking at one of the EDS specific forums online for more about this. :)
miliamince 1 year ago
i'm 19 and i have a mild form of EDS and it does hurt to stand and walk for long periods of time. i've dislocated almost every major joint in my body. the pain from these dislocations has further intensified the pain. But I've learned to keep myself from doing activities that might lead to a dislocation. I've not had a dislacation for a few months now since i've started strength training and using braces on my knees. Just my story
dacksoldier 1 year ago
@dacksoldier Dosent sound like you have a mild version of eds to me if your dislocating all the time, im hypermobile but dont dislocate maybe cause ive always kept my body strong but i get ligament injuries all the time.
LucaBlightBadass 4 months ago
Holy fuck. omfg
fuckingsuckmyballs 1 year ago
And i thought 1 dislocation was painful. damn i feel sorry for the people with EDS i mean it i fell sorry for u people
Deathencounter 1 year ago
I think this video is great! It shows people who don't know anything about EDS in how much pain people with EDS are!
I have only a slim version of EDS, but even so it's still painful as hell!
I enherited it from my mother and she became disabled through this.
It's one of the diseases that can't be treated, and that makes it even worse.
Three-thousand thanks for the one who finds the cure!
nedkiller12 1 year ago
it makes me feel very bad watching this :(
TranzoBoy 1 year ago
I have ehlers danlos. Standing hurts like so bad. I can sit on the ground with cross legs. I can throw a ball problerly...
green2666 1 year ago
can u upload the whole episode ^^
niezach01 2 years ago
I saw this family's story several months ago and still think of them quite often. I've added my family's story in hopes that viewers of either video may realize that there are so many of us out ther living with this - and that hopefully we can increase awareness and understanding. Best to all of you!!
ddvaughan
ddvaughan 2 years ago
I was diagnosed with this in October. It's really hard to be a teenager and have this. I can't run and play sports with my friends, kids call me lazy because I can't participate in gym, can't walk up the stairs at school without falling and hurting myself. It sucks.
SuperILY123 2 years ago
umm when i first heard about this, i thought maybe i had it. i have always been SUPER flexible and often suffer unexplainable muscle/bone injuries.
but after watching this, i realized that what i have is NOTHING as bad as this. man, it must be rough. :(
RaybRay89 2 years ago
there is more than one type of EDS, and it doesnt have to be as severe as this-- it will progress, if you do have it, but truly you should still look into it.
mamaismcbusy 2 years ago
it can be in less extreme versions and you can get it more burden from it later in your life
hellaman14 2 years ago
There are other types of conncetive tissues disorders such as the very serious Mar Fans syndome my family has died from,
DixieSparkle 2 years ago
O.O thats scary...he is like a living lego
MetalDominican 2 years ago
hahaha
RaybRay89 2 years ago
Comment removed
Mexxi0 2 years ago
just wondering, how much does muscle building help to someone with EDS?
Deathencounter 2 years ago
They knew I had hypotonia since I was 3; Later a smart doctor found it was EDS. Luckily, not vascular. 24 hour pain and no can see or tell you are in pain. I used to always due tricks for my friends and family but sometimes the shoulder dislocations were a bit much like the one i experienced smashing a volleyball 5 years ago. These people have it worse but now my whole body is oste-oarthritic. The neck being the worst. This family is amazing. Everyone has it! Rare, like 1-15,000.
eqsmooth 2 years ago
This comment has received too many negative votes show
I always wish i had it
kaelinjohns 2 years ago
Just out of scientific curiosity, are you quite tall and thin with hypermobilty of the joints
piddleton 2 years ago
Not at all. I don't think you must be tall and thin to have EDS. Most of my life I was 5'10", 180. lots of people are quite stout or average.
eqsmooth 2 years ago
That is important, becausemy daughter had Mar Fans and she was very short, She died If its in your family you need to be checked,
DixieSparkle 2 years ago
i'm so sorry. I had an echo-cardiogram a moth or so ago which came out normal. My mother was finally diagnosed with ehlers danlos. a great gynecological surgeon who studied at Mayo clinic just knew she had it. I got it ftom her but all she thought she had was fibromyalgia and arthritis. Difficulty is that joint disease specialists don't like to take insurance.
eqsmooth 2 years ago
Comment removed
Deathencounter 2 years ago
Comment removed
angelginel 2 years ago
I have it and it is exaggerated there are different types of ehlers danlos.
mines not bad and i couldent really imaging living without it id feel too stiff.
sladehiro 2 years ago
I found out I have this and when they said standing is liek torture they are not exagerating.
ray0426jh 2 years ago 27
@ray0426jh
Wow. that must be hard to cope with. Do you take pain medication for it and does it help at all?
Joxman2k 1 year ago
@ray0426jh that just means you're fat
bassman109 1 year ago
@bassman109 Okay so yeah, I weigh 140 lbs and I can barely move yet... I am fat? You sir, Are a failure at trolling.
ray0426jh 8 months ago
@ray0426jh EXACTLY!
I'm 29 and feel like "an old man"
Jazzyteach65 1 year ago
im 14 year
i have got this
and it is realy fucket up to have this shit
musicalnightmare51 2 years ago 14
omg im 14 n hav it too, it really suks
metalocolypsecinabun 2 years ago
@musicalnightmare51
That
is
good to
know
.
pinglauwa 7 months ago
the last 10 seconds of this video is the most fucked up thing ive heard all day
MagicMushroom33 2 years ago
They are really brave...but I wish there was a way to control your genes to be able to put the ones together which dont have the disease and have healthy children.....
phabbiola 2 years ago
u dont want that... gattaca
lipky 2 years ago
that was a good movie.
ryanbert 2 years ago
how do you download ds video???? anyone
eireezechan 2 years ago
Comment removed
BuddyBoy091994 2 years ago
no penis aaaaaaaaaaahhhhhhhhhhhh
darkevilcreature 2 years ago
what does that have to do with anything?
BuddyBoy091994 2 years ago
This comment has received too many negative votes show
my ffriend has this thing he a bitch about it he ask me to grab him a pencil that like 1 cm away from him and im like 1 meter im like more your god dam finger!
123tna321 2 years ago
I'm a dc area Comedian with classical eds. If any EDSers need a laugh stop by my page anytime
DustinWoodComedy 2 years ago
i have classical eds. i dislocate my hips about 10 times a day, and i'm only 14. i use my disease to my advantage though, i am a dancer and i can do oversplits to 190 degrees, and stretch in many ways that my classmates can't. i have very strong legs from dancing so my knees are ok but i have to be very careful.
xAlethiax 2 years ago
5:49, lmao
jinnai7 2 years ago
Is it like this by every type of eds?
xNinja73x 2 years ago
No. The doctors think that I have a very mild form of EDS (hypermobility), but haven't been tested - couldn't be bothered. I have no real pain or problems with dislocations. Have a look at the Wikipedia article on it for a good overview.
methxs2008 2 years ago
so you feel like other people?
xNinja73x 2 years ago
I have EDS type 3 && i just found out noone new what it was!
babiidolllx 2 years ago
im strongly considering thetting the heiroglyphic tatoo he had
jinnai7 2 years ago
this can also stand for erectile disfunction syndrome. jkjkjkjkjkjk
im sorry blame my adhd
tastytoast666 2 years ago
Fuck you faggot.
Seriously go fuck yourself you fuck, truth is you probably wont go half as far in life as these people, regardless of having the gift of a strong body.
RedGrobo 2 years ago
owned
tastytoast666 2 years ago
My son and i have ehlers-danlos syndrome type IV ( vascular) except my son has EDS IV with cleft lip and palate and marfanoid symptoms. His skin looks 90 year old and as thin as a rake. Its a horrible thing to have. I would not wish this on my worst enemy.
6littleducks 2 years ago
I found out that I had EDS last year. I severely dislocated my knee by taking a step to my left. I just had knee surgery on February 10, and I still can't walk. EDS is not fun.
jkweirich 2 years ago
so can people with with EDS not lift heavy weights or run?
tastytoast666 2 years ago
i have EDS and we are actually encouraged to lift weights to build muscle to help support our joints. heavy weights? prolly not...there can still be problems with working out and EDS, ive subluxed many joints doing free weight excercises before. but with EDS suluxations (partial disslocations) are just a part of life
running is hard because it is really difficult on the knees. instead low impact exercise such a water sports or using elliptical machines instead of running is recommended.
kellyjojojo 2 years ago
I can lift some fairly heavy weights, and have great muscle tone.
But those muscles are always in spasms for supporting my defective joints and they keep me in constant pain.
If I take muscle relaxers to ease the spasms then I am rubbery and can't get around.
And yet you have to figure these things out for yourself, the doctors are no help.
It is akin to taking a fish to see a horse doctor, they are baffled and are as likely to kill you trying to cure you as they are to help you.
77095070 2 years ago
What if their neck gets dislocated? Can that happen?
fluocantus 2 years ago
I myself have this, I have had my neck sublux. I had numbness and tingling It is dangerous and not fun.
fawn2388 2 years ago
My neck gets subluxed (partially dislocated) daily. I have to reset it and the middle of my spine several times a day without fail. I have accidently nearly fully dislocated my neck before by accident- if you do that you will faint I've found. My neck is the most painful part of my body. My mother had to have the bones in her neck surgically fuzed together because of the EDS subluxations, it simply wouldn't stay in place anymore.
KristiD1975 2 years ago
but the positive thing of this is:
You wont get any crinkles when youre old^^
un0holy 3 years ago
My wife has eds IV.Didnt hit her till she was thirty,she cant hardly get out of bed.The Truth-Getting fucked wherever you turn.insurance doesent cover half the meds,No social security waited to long to file, only s.s.i.600.00 a month if no one else works,went to job family service for help they told me to file fmla at work, got fired,no insurance will cover(pre existing)4 kids,all have it,now im losing my house,so FTW I fucking hate eds,have to get divorced so i can work or we lose ssi,medicade
semiLivedj 3 years ago
i feel for ya bro...
pinoyboiz 3 years ago
I got EDS too! I consider more of an ability than a disability! You should see my split finger fastball!
ben2thez 3 years ago
This has been flagged as spam show
What a crybaby
BillyCorgan777 3 years ago
You're a coward, Billy.
YunaDono 3 years ago
I've got it too. & Chiari Malformation & many other things. EDS is very painful.
iwuvnickjonas22 3 years ago 2
I have EDS as well. I have severe hypermobility, and have had a lot of dislocations. I have 4 children, and 3 of them are probable for having it, one has been diagnosed.
kraizeeangel 3 years ago
i have type 3 too and i'm only 15. my body dislocated more than you could imagine. I sleep the entire night with my shoulders dislocate, when someone shakes my hand, my writs dislocates, my jaw dislocates when i eat...i dislocate more than 150 times a day. let me tell you, its not fun!
cupofsugar9 3 years ago
Oh my god, this is a crazy disease.
MaryJamesMurdoch 3 years ago
yep. i got it to, type 3. hypermobility. sucks.
latina100m 3 years ago
me too. type three. my shoulder dislocates more than 5times a day. hips, every joint, always dislocating. it sucks dont it.
latina100m 3 years ago
it does, ive got it too =(
sn1pzor 3 years ago
please come to my page and see what one woman is doing to raise awareness.
Her courage is astounding, her mission undying.
please come and be a part of her mission to raise awareness for eds & masto
many blessings & peace to your home
~ Gab x
divagab 3 years ago
I have EDS IV, have lived in a wheel chair at some points of my life, and have knee replacements, shoulder replacements, and am heavily medicated. Thank God my parents didn't know that I'd be this way, or else I'd never have forgiven them for not taking precautions. These are the most irresponsible parents on the planet, and I can't image who would be selfish enough to "hope" their children wouldn't have EDS. When a person has this condition they should take precautions not to reproduce.
kaggyx 3 years ago
If any of you who have EDS are looking for something other than Opiots to try for controling the pain I have recently been put on a drug called Lyrica. Like everything else it won't stop the pain, but it has dulled mine dramatically. I hope this helps.
kaggyx 3 years ago
My Neurologist asked if I had taken it before and may try me on it soon, Did EMG and said I have nerve damage and Neuropathy then started me on Neurontin. It helps for the pins and needles type of pain, but doesn't help with the sharp pains or acheiness. How long did it take them to find out you had EDS?
77095070 3 years ago
I found out when I was 21, Doctors began cutting on me to try and "fix" the hypermobility and cartlege damage when I was 14, began speculating on what was causing it when I was 10 or 11. how long did it take to find out for the rest of you? Does Louisiana just suck at diagnosis, or do more doctors really just not know?
kaggyx 3 years ago
I live in Houston, home of one of the best supposed medical centers in the world.
And I didn't find out until I was 50, and I found out about it first in magazines and on the internet and had to point it out to them.
Once I pointed it out to the doctors and tried to find a Rheumetoid Specialist to confirm it I found out that there is only one in town and he can't fit me in.
I had to settle for a Rheumetologist that doesn't really know what to do about it.
77095070 3 years ago
Did you ever find a doc in Houston that knows about EDS? I am looking and would appreciate any help I can get!
kellybellows1 2 years ago
Dr. Mark Reveille is supposed to be the one that everyone else refers thier EDS cases to, But you will have to get a doctor confident enough in thier diagnosis to plead your case and get you a chance to see him.
My doctors are afraid of being considered crazy and not knowing what they are seeing to go the distance and make the call.
They have tested me, know I have it, but like a UFO sighting they do not want to go on the record for anything.
I wish you the best!
77095070 2 years ago
I have to disagree. I think giving away the right to have a biological child is a decision only the parent can make. I understand your point of view if you regret the way you've lived, but if they're just thankful that they are alive, I expect they'll have taught that kind of strength to their children.
misguidedapril 3 years ago 2
Having lived in pain for my entire life I can relate to why a person who has experienced this wishes that no one else suffer the same fate. And although I loved children I never wanted one of my own and frankly I believe deep inside it was natures way of telling me I should not produce offspring because they might have the same life I had. when doctors cannot solve your pain and your spouse wants a child sometimes you might find out too late and really regret what you pass on to your kids.
77095070 3 years ago
I agree wholeheartedly, and that is what I am giving, the feelings of a person with this defect and I am relating how it makes you feel about something most people would take for granted like reproduction.
I am happy that my brothers and sister won the genetic lottery, but know it would not be worth the risk of trying to have offspring when you have this affliction and know just how insidious it really is.
But truthfully I am not grateful I am alive and can recall begging for death as a child.
77095070 3 years ago
My daughter and I both have a rare cross-over form of both Hypermobile & Vascular EDS, now I can show people this video, and they might understand better what we go through.
MACpowered 3 years ago
I have the cross over too. Its hell, an honest hell! I really feel your pain x
xshineythingsx 3 years ago
i have eds and it is aweful. no one seems to understand. it os hard since im just a kid. i dont have type IV but i have stretchy skin and my joints dislocate. i would love to talk to someone who has it. coinsidentaly my name is carly and i have red hair
jjsrosie 3 years ago
I have type III of EDS (hypermobility). I pop out around 15-20 joints every day... on a good day. I'm constantly in a knee or wrist brace, an arm sling, or a wheelchair. It's an EXTREMELY good day if I'm not in any of them. All my life I was told I was making it up... but doctors proved I wasn't ^-^
I just feel so lucky that I don't have type IV (vascular).
YunaDono 3 years ago
i have a verry mild case of what you have i have dislocated my fingers but thats about it but i have all the pain if im not in pain its a wonderful day
ministoked 3 years ago
This comment has received too many negative votes show
LOL!.at the sex part..wtf will happen..his dick gets dislocated..lol..no offense..to tell you guys the truth tho,I kinda want this too,but not a very severe case of it
nikidizzi 4 years ago
actually this syndrome helps a little bit in sexual relations.
because of the rubbery collegen in your body, your dick can become extremly big.
i am 14 and mine is already 20cm long XD
(i have the hypermobility type)
but my legs hurt alot just by walking maybe a couple of meters.
and i have too take pills too stay awake because i don't sleep alot.
so you better reconsider wanting too have this decease
svartebert3 4 years ago
This comment has received too many negative votes show
lol!...so yo can control your dick??..no homo
nikidizzi 4 years ago
This comment has received too many negative votes show
haha, kind of XD
i'm not gay but it could help too have a great siced dick :P
svartebert3 4 years ago
haha!okay watever you say
nikidizzi 4 years ago
No offense man, but you might want to reconsider wanting this syndrome when you can't sleep because you're overwhelmed by pain, constantly on pain killers and dislocating nearly every joint in your body.
YunaDono 3 years ago
I understand someone else pointed that out to me a while nack
nikidizzi 3 years ago
Im sorry but fuck off! Its a HORRIBLE condition! Even a mild form of it hurts, just be thankfull of what you have and dont insult people with this shit, it hurts like hell.
xshineythingsx 3 years ago
whoa..whoa..whoa..clam down yo.You took it the wrong way..I was not insulting in anyway,I just thought it's a pretty cool condition,but now that you mention it I am kinda glad.well anyways,sorry if I have offended you in any way
nikidizzi 3 years ago
i have eds too. my case isn't dat bad. my shoulders dislocate frequently but i get used to it after a while and learn to just move my arm in a way that it goes back to a normal position.
sunabeepdeep 4 years ago
same here, my arm dislocates all the time too.
but i diden't know it was eds untill yesterday.
and my skin is like rubber too, but i wtill don't know how bad my condition is
svartebert3 4 years ago
I have Ehlers-Danlos Syndrome type 3 and i am in constent pain i can tear ligments and bruise so easiley and i have been ina wheel chair all my life for if i put any presure on my legs hey will brake
taurenmale 4 years ago
yea i have EDS too. it really sucks some days i don't want to get out of bed i am so misreabe. i've been on crutches, in a wheelchair or in a sling literally every other week. i constantly tear ligaments......
Steveoisminebitch 4 years ago
dislocates*
hahadillonsface66 4 years ago
lol i have that disorder and my knee pps out after every step
hahadillonsface66 4 years ago
thank you so much for posting this, been looking for it for ages
lilj34 4 years ago
I have EDS too.
I hate to dislocate my joints, but I really like to be hypermobile... :)
Anyway, Excelent video, it's on my Favourites!
juanpamanson 4 years ago 3
I have this too. I saw this episode on TV and said "Oh my god that's me!" I've been tested for so many things, some devasting to hear when you're young and still in school. When i was in Elementary school I was called, "Pretzel" I looked into contortionism for a while and now I just kind of do it to win bets. Seriously though, It impacts every day of your life and always hurts but you learn to appreciate a wicked lot. Thanks
Canichenoir 4 years ago 2