Ehlers-Danlos Syndrome.... Nothing Hurts in my World.

[jonnysthedude1]

Good information, nice one. I have type 4 and have just had my 50th , so not all depressing.

[AmericanskBlatte]

fuck. my. life.....i just found out i have this shit....can anyone recommend some sort of physiotherapy or conditioning so that the pain can go away? there has to be something...this is bullshit...

[ITSONLYMEWATCHING]

@AmericanskBlatte

There is nothing that will make the pain go away and I'm sorry to say it, but it will just get worse. As a kid, I was the life of the party,doing all the cool stuff with my joints, now I'm paying a hefty price, I'm on Methadone, Soma, Fexeril,and Mobic for the pain and muscle aches and my bad days out weigh my good.

[Elfins]

Thank you so much for all your coments, lots have happened since I made this video which was one of the first I ever made and I was so green then. I will try and re-do it and slow the writing down. To all suffering with Ehlers-Danlos, you have my empathy and heartfelt understanding, to all carers, hang in there xxxx

[zipperedzebra]

Elfins, If you could slow it down so we could read and digest the information, and if you would correct the misspelled words so credibility could be maintained, this would be a very powerful vehicle for teaching the public about EDS.

[paintedchicken]

i once got told "de mind it can do funny tings.." Can you imagine? Got dx'd when i was 37. Been tearing ligaments and subluxing/dislocating since i was 7.

i am type III and the next doc who says it is the "lucky" one i will kick him/her in the crotch. People (docs included) don't realize that the categories are our inventions.. the disorder doesn't care. So i have type III with features from some of the other types.

that said.. i do ok. i am a fighter and i will have a decent life

[paintedchicken]

where did the song come from? It isn't music i'd normally like, but it has stuck in my head.

[cheshielynx]

Bless you for being such a supportive mother to your daughter. I have Type III EDS, my mom who's EDS is much more benign makes me feel like its my fault for hurting all the time.

Blessings to you and your daughter.....

[adriano900]

Good video , i have the hypermobility type , but by chane i made examination on my heart and i found out that i have mitral valve prolapse with trivial MR :(

[RevivingRichelle]

I have overlapping connective tissue diseases lupus, etc. but this was the first one i was diagnosed with and i'm thankful that it was discovered by someone knowledgeable otherwise god only knows where i'd be today. good video....sad disease.

[Nina11204]

I also have EDS (Hypermobility Type)... Not much fun eh? At least we know what it is – the not knowing as so much worse I thought....

You may already know this stuff, but some things that can help:

• Starting Pilates, and practising regularly is the single best thing I can suggest.

[brucegunn]

I wish the words didn't go by so fast. I keep having to stop it just to read everything.

[Elfins]

@brucegunn

Yes, sorry about that. It was one of my very first video attempts when I didnt really know what I was doing. I left it up as it was getting good comments but I should really re-do it and slow the writing down.

[brucegunn]

@Elfins Thanks for responding. My wife has EDS and Madelung's wrist deformity. I'm very glad you made the video and only suggested you slow it down so more people can be aware. Are you aware that you are a "zebra"? And are you familiar with the "spoon theory"?

[WildBlue77]

Really great video, very informative.

[tec123twirler]

i have type 3, it sucks, but i rly liked how this explains it so thx

[PinksHugeFan1]

I have EDS type 3, it doesn't hurt that bad but its usually REALLY annoying and i get teased for it at school. I hope it doesn't get worse as I grow

[lizziedever]

i have the same thing and im done growing we caught mine when i was growing because the pain would get worse. i hope this isnt the case for you! stay strong and dont let any teasing get to you look at things in a positive light and things always will work their way out

[scrovax]

the question is why does people at your school knows about it?

[mafiaprincess4u]

If anyone suspect they or someone they know may have this conditions do not take no for an answer until a genetist has tested you. Since the day my son was born I saw something not quite right in him. I kept taking to doctors. On one visit I was left in the room with his file, so I started to read it. It was noted that I (his mother) showed signs of Munch-hausen syndrome. This is when you make your child sick so you will get attention. Do not give up, I am glad I did not. it explained much.

[mafiaprincess4u]

A good way to strengthen muscles on our limited scope is swimming. It does this with minimum stress on the body. Another is non-sparring martial arts. It is important to take extra vitamin D as our body's requires extra. Keep moving, as hard as this may be somedays you want to keep your muscles as strong as possible since in many cases it is the only thing holding us together. Lyrica and Cymbalta are two great drugs that help with pain at a cellular level and are non-addictive. I take both..

[mafiaprincess4u]

2 years ago my 6 year old son was diagnosed EDS, through the genetic testing I found out I had it which explain so many situations in my life. I was diagnosed with type I, II,III, and IV. My mother was was diagnosed with these plus kyphoscoliosis, which explains why her scoliosis is so sever. Who know what my son will completely end up since he is only 6. In response to NataliaKiseleva..the pain never truly goes a way, but there are ways to help prevent the dislocation. Strength the muscles!

[NataliaKiseleva]

Hello! My name is Natalia. I have suffered EDS for 20 years I have hypermobile EDS, articulate form. At first it was not so bad. But now it is a catastrophe. I have my joints dislocated, ligaments broken. Medicine stop help me, doctors cant help me too, I feel so bad. Please, help me. How do you overcome it? What medicine use?

[NataliaKiseleva]

.Hello! My name is Natalia. I have suffered EDS for 20 years I have hypermobile EDS, articulate form. At first it was not so bad. But now it is a catastrophe. I have my joints dislocated, ligaments broken. Medicine stop help me, doctors cant help me too, I feel so bad. Please, help me. How do you overcome it? What medicine use?

[NinjaLynda]

I have EDS Type 3, my Mum and I have just been diagnosed today. The multiple shoulder dislocations alone are agony. Thank you for this video, it explained a lot.

[proud2Bprude]

Ya I have the mistral valve thing too with my ED

[kandinsky51]

I have EDS Type 3. It's agony.

[scrovax]

every night i sleep with my shoulder dislocated and i got eds type 3 it actually explain lots of things

[TheAnimeKid1]

Thanks for this video, it really explained a lot, for years I've been going to the doctors about the pains in my joints until finally yesterday I was diagnosed with hypermobility in my ankles, wrists and hips. Ever sinse I was 12 the dotcors always put it down to growing pains, even though I knew something else was wrong. So I thank you for this video and rasing awareness <3

[loveabeyta]

I have type EDS type 1 and 2. I dont think about it too much because i have lived with it all my life, but its weird how the little things in life reminds you, like riding a bike and popping a ankle out, or not being able to play with your friends because your afraid of getting stiches again. It can be hard but i have am me, and EDS makes me unique

[Wolfsbane909]

I have EDS type 3 hypermobility, it doesn't hurt me at all, I have it in the elbows, allowing me to extend 30% range of a normal person. I think I have a mild case of the vascular disorder mentioned, but my veins or skin have never just spilt open..Its genetic my dad's got it, grandpa his dad, his brother, it ONLY passes on in the men of the family. my sister unfortunately has sciliosis =( she too has EDS type 3. I have always told her to stretch but she never listens..

[kirafaye]

I have hypermobile eds on top of chiari malformation and syringomyelia.

[123tna321]

my friend has this and hes a bitch about it theres a pencil about 1 cm away from him im sitting 1 m away from him he tells me if he could hand me the pencil

[datzfast]

i have suffered for 30 years. 4 weeks a go i rolled over in bed dislocated my shoulder while asleep and must have slept a long time that way. at the time my knees were getting so bad i could not walk. please try mega doses of vitamin C. i did and in one week my knees are fine and my shoulder is vastly improved.

i suspect the vitamin c is responsible for the improved collagen repair

[dragonesse91]

datzfast-I have no diagnosis of EDS-but all of it fits for members of my family-we all manifest some symptoms in the DX. i wanted to say-Kyphoscoliosis in mycase was almost completely stopped when I went on MINOCIN/doxycycline courtesy of "w w w roadback . org" for what seemed to be SJOGREN'S Syndrome! It cured/remitted many of the problems I had. Also along with Vit C megadose I take Flax oil with Cottage Cheese and MSM and fish oils and Vitmin D-3. People don't understand why I look so well..

[rprimeau95]

Hello I too have EDS as well as my 5 children we have Classical Type I. Nice informative video however you need to slow it down so people can read it before it goes to the next slide. :)

[ChanieAllen]

I have a rare, severe collagen disorder similar to EDS (that's all my geneticist will commit to, nice, eh?). Thank you for this video and bringing awareness to this painful and often life-threatening condition!!

[individualgemgem]

very good but was a bit fast,struggled to read it all,good to see more about e.d.s ,my 15 year old daughter had e.d.s and finds it really hard to get people to understand she cant do the same stuff as them,jule xx

[RavenLeeofBlackRose]

I started a cause on facebook, it raises awareness and funds for Ehlers-Danlos, it is new not many members, but if you suffer like I do please join to help the cause.

[aaronp20]

Hi. I have Ehlers Danlos. I was watching this and at the end you have something about your daughter. I have a friend who Has Chiari Malformation and had the same problems as your daughter. They found out she had EDS during sugery.

Has your daughter been tested for Chiari? If not then I would check it out. My friend is a model now and the Discovery channel even did a show about her.

Please look into it.

[semiLivedj]

As long as their is medical insurance their will be no help for eds people cause it cost to much to treat the symptoms of the disorder.i had insurance from work that covered my wife who has eds.Then got fired for bullshit reasons with no help from the union.Had outstanding proof of their lies.Alsco metal Ashville oh.Metal union can suck my balls.They took my money for 3 yrs,Crooks,If your in a metal union BEWARE

[semiLivedj]

Now for the truth-My wife has eds didnt hit her till her thirtys.Chased from hospitals as drug seekers.insurance wouldnt pay for meds,her meds were 8000.00 a month.I lost my job because of cost of meds.She cant hardly get out of bed.Cant get s.s.because she tried starting her own buisness(salon)Missed by a half point.govt. only goes back 6 yrs.Gets s.s.i.600.00 a month if no one else works.Have 4 kids in school.We are loosing our house,Had 5 years left on mortage,refinanced 30 yrs.Hurts Everyone

[Geszelda]

I have Ehlers danlos and it is very painful the pain never stops and its very upsetting im 21 and my life will never get off the ground. This is good info but the song mocks how i feel about it.

[MartinoSalvatore]

Perfect, this is a very instructive video...!!!

[8imonn]

I think my brother has the very rare one, (V,V111,X or X2) since he is suffering alot, and it is affecting not only his body but also his mind.

this type EDS makes him produce less muscle and also reduces the intake of fat aswell...

Thanks for the video.

[gwranch]

This is awsome and I want to thank you so much for Helping us all out. I too and unfortunate sufferer of eds; I have the Vascualr type with about 28 anurysms. And I just want to thank you. I also have a site on myspace if you want to check it out.

Sincerely, and

Thank you so much. Someday we will find a cure.

Grace

[milib0y]

hey elfins is all this info on this vid frm wikipedia?

[Elfins]

I had to go to Wiki to check what you were talking about and was impressed, as yes it looks really similar however its not the same as mine. My video was done a long time ago, some info taken from medical sites, some from knowledge of my own. But in answer to you, no I didnt take the info from Wiki.

[svlester]

I got EDS but i dont have a serious type or i didnt think it could be this bad. i didnt know this many ppl have it as well

[Elfins]

There are many with Eds worldwide, some are only mildly affected, some moreso. Thats whats so incidious about the condition, there is no set rule or path, all are different yet similar.

[ilovejocelynlauren]

i also suffer from E.D.S. and it feels like nobody gets it,i wish sumbody who doesnt have wud understand,i feel so lonely

[Elfins]

My heart goes out to you as it the most isolating feeling to think that no one understands the pain or where you are coming from.. You are not alone

[limalicious]

Thank you for posting this video! I suffer from EDS, hypermobility as my primary symptom. At 22, jogging is a painful experience. Raising my hand to answer a question in class painfully dislocates my shoulder. My back always aches and my patellas aren't straight because the joints can't hold them in place. Getting out of bed some days is just hell. And in a strange way, it's good to know I'm not alone.

[Elfins]

I am sorry to hear about your Eds but well done for struggling on with school. Its not easy is it, being in constant pain which others cant see :( Since posting my video's I am amazed at the amount of people who suffer from this condition and how sadly lacking what little help, information or understanding it out there in this day and age. Thank heavens for online groups eh?

Take Care

[individualgemgem]

This is a great video i suffer from E.D.S and have added it to my Bebo group profile im am hoping to meet other people with E.D.S as there isn't anyone in my local area

[Elfins]

Thank you for your comment and sorry to hear from another Eds sufferer. You are more than welcome to add this to anywhere you choose as the more people that see it the more the word gets spread. Like you, we are virtually alone in the area we live in and if it wasnt for the only groups, well live would feel very isolated.

[Empath911]

Wow! I never heard of it. I have fibro, but I think I need to check this out. Great video, Thanks!

[Elfins]

Fibro is classed as a pain syndrome, a combination of symptoms causing the intence pain of FMS. In many with Eds, they also have Fibro or occasionally its just called a chronic pain syndrome rather than a singular name. Do check it out as there may be an underlining cause for this.

Take Care

[PrincessKate]

im glad you made this video. thank you. i have EDS type 3, and possibly fibromyalgia. i appreciate the video to try and get people to understand this invisible illness and make more people aware of the situation.

many thanks

x

[Elfins]

So sorry to hear from another who suffers this awful condition. There are so many with Eds who also suffer Fibromyalgia and Chronic Fatique and often the names get muddled which sort of detracts from what is the actual problem in the first place as doctors tend to focus on the Fms/CF rather than the Eds which is whats causing those added conditions in the first place. Nightmare isnt it :(

[smunchnU]

i have it but its not that bad

[Elfins]

You are very fortunate which is a blessing. The problem with this condition is that there are so many levels from the mild to the severe. My son also has Eds however his is very mind compared to his sister. Thank you for taking the time to comment.

[fizzandpaula]

hi my son connor has the vascular type of eds and in february this year lost his right arm due to an arterial bleed in his chest.the arm had died and the only alternative was amputation .this syndrome can kill we have been lucky so far but there needs to be more done to be made aware of this awful thing.if you or your child have any numbness in any limbs then get help dont delay .if this saves one life then its worth it

[Elfins]

As a mother of a disabled child of Eds, my heart goes out to you. I am so glad you commented on my video as many types overlap not normally from 1V to other types, however veins can be weak in all types and these things occur, all should be aware.

Warm blessings to you and Connor

Linda

[FIBROatFOURTEEN]

thakyou for explaining Ehlers-Danlos i've always wanted to know what it was after someone mentioned it to me...i dont have it (apparantly) but have fibromyalgia and hypermobility although im not convinced thats all it is.

i am hypermobile, have flat feet, chronic pain (& chronic headaches) and when i scar keloids form. i also sat, stood and walked late and hardly crawled as a baby. could it be Ehlers-Danlos?

thankyou xx

[FIBROatFOURTEEN]

and thought i'd add i have long fingers that are distorting and my grip is severely affected. i also have bilateral clinodactyly. my spine is by far the most painful part of my body, back specialist said scheuermann's disease but rheumatologist said normal hypermobile spine. so i dont knwo what is wrong. but all i know is i am in pain and its taking away my childhood.

again, thankyou x

[Elfins]

I am sending you a private message as its easier to write more that way :)

Blessings

Linda

[divagab]

Beautifully moving video.

Thank you for sharing.

We are also on a mission to raise awareness and I want you all to know you're not alone. The media has picked up on this awareness mission and we are doing our best as artists to assist in the raising of much needed awareness for this condition.

Blessings & peace to you all.

Please watch the media video attached and join us. Thank you for this video. It's beautiful.

~ Gab x

[MostUnlikelyGenius]

my cousin and i have eds, her worse than me. she started getting her symptoms around her freshman yr in highschool and then it got really bad sophmore and keeps getting worse...im going into my sophmore yr and i already have the same symptoms she had... i hope it doesn't get any worse but its great to know other people have this

[ministoked]

thank you so much for posting this vid everthing hurts in my world

[HLSMstudio]

I just love this video, it sums up how we feel, that others don't seem to understand.

[blindbendy]

thank you so much for this very clear explanation of EDS. im 27 and its taken all this time for me to be refered to a rheumy. if i hear 'theres nothing wrong' one more time..

iv been in pain my whole life, didnt walk till i was 4, my hip and knee dislocate. i have chronic back pain, i walk with a limp and i cant stand without leaning on something.

it took me going to a chiropodist out of desperation leading to the refferal.

this film has summed up my life.

hope your daughter is ok.

[momofautie]

Thank you for this video. I have types II & III.  I am permanently in a wheelchair for leg instabilities. Sadly it took doctors 27 years to figure it out; otherwise, I may have had a shot. Both of my kids have it as well. I also have a heart defect related to it but not the prolapse yet. Blessings to you & anyone else with this. I know you suffer not just from pain but other people who just don't have a clue including family & docs. Di

[Elfins]

My apologies for not answering recent questions. I have recently lost my sister and am still grieving, but I promise I will reply to you all very soon.

Elfins aka Linda

[BoxxingTheStars]

The one thing I wanted to ask everyone on here is to list what type of medication is everyone taking? I'm curious to see what other doctors are using to try to help with the pain.

[BoxxingTheStars]

Just wanted to say thanks for the video. It's nice to read about that there is someone out in this world that might understand what its like to be me. At the age of 17 I was in a car accident. I hit a tanker truck semi head on and the seat belt didnt work so I hit the steering wheel breaking my sternum and ribs. Well long story short they would never heal, they kept shifting and coming out of place. It took 2 1/2 years specialist after specialist to finaly figure out my problem.

[backflipkid2]

hi I have been diagnosed with EDS two days ago and i was devistated, im 17 but i used to dislocate my wrist and sholder blade and then pop them when shaking their hand, i also used to bend my fingers and thumbs paralell to my hand, i dont find it so amusing anymore, also i have created a bebo group site for EDS for similar people to just talk!

[Lin171]

nice video :) I have EDS, and wasn't diagnosed until I was 16. Before that I was called a hypochondriac from kids at school for my frequent injuries, and when I really started to decline I was bounced around for over a year before diagnosed.

[Elfins]

Aw Lin my heart goes out to you, its not easy is it. What cant be seen by a standard blood test the doctors rule out. Collagen defect is a relatively new thing except those that suffer have suffered for years with this condition. Perhaps things will change in the future? All we can do is shout loud and spread the word.

Linda xxx

[BoxxingTheStars]

what is your email address so we could talk easier without the whole 500 word thing.

[YoMags]

I can't thank you enough for doing this message. Bless you, Mags

[Rekisum]

A good video. This should be a compulsory presentation for any authority that have to deal with a person suffering from EDS.

Life still wonderfull for me... the only thing i really complain about is the lack of understanding.

Thanks for this!!! It's important!

[Elfins]

Ignorance and lack of understanding is an ignorance but when one thinks about all the conditions that can be cured or at least helped, Ehlers-Danlos is a short straw, thats life sadly.

Thank you for your comment, its good to spread the word :)

[8imonn]

My brother have EDS, and I have to admit that this is the first EDS-video I caught up with on youtube, this disease is very unknown, sadly.

My brother have shoulder dislocation, and the syndrome makes his body not to accept fat. So he's kinda fatless in his body... He have also stomach problems...

Thanks for the vid

[Elfins]

I am sorry to hear that your brother has EDS. Sadly its difficult for those with EDS to have muscle mass, so it seems like they are jelly like, not fat and no muscle. Yes many with Eds has stomach problems. The trouble is the the collagen affects everything including the structure of the inner organs hense the stomach. Unfortunatly with that comes other problems which can be extremely complex.

[8imonn]

Thanks for the info, and im also sorry for your daughter... Keep up the good work your doing(!)

=)

[Elfins]

Thank you for your comment, forgive the lateness I am mourning the loss of my sister at the moment. Eds is a terrible condition to have and my heart goes out to anyone suffering this condition.

[twish1999]

I have never heard of your daughters condition, but she is beautiful :-)

x hugs x

[Elfins]

Thanks Twish :) I tell her every day how beautiful she is but she is humble and thinks I am biased which I am of course lol. Its an terrible condition to have to spend your life with, every day is pain filled but to different levels. I really should do a vlog and explain really. We are lucky in that it could be much worse and thats exactly how she views it, that there are others far worse off than herself.

Thanks for your comment, greatly appreciated.

Linda x

[korkyackland1969]

Hi hun, I just wanted to let you know that my daughter has finally been officially diagnosed with EDS Hypermobility type (Same as me) and Fibromyalgia, she is starting physio soon....I had my first full shoulder dislocation 3 days ago so typing wiht one hand! Lots of hugs to you and your daughter, from me and mine xx

[Elfins]

I was wondering how you were, so nice to see you back again. Ouch a full shoulder dislocation is so painful isnt it, so take it easy and allow it to heal, could take a while though :( Way to go daughter. The hardest thing is getting a correct diagnosis but at least she has that now. Loads of things have happened with us but might take a book to right it all down in lol. Chels doing ok at the moment, up and down, no two days the same as you know.

Hope you feel better soon

Hugs

Linda xx

[RoobyJuice]

Was that your daughter at the end? She is beautiful.

Fabulous video hunny, people need to know about it. I hadn't heard of it until you told me . x

[Elfins]

That's my daughter and she is lovely even though I say so myself :) Thanks for your comments, it was the one reason why I came to Youtube really, to spread awareness etc but somewhere along the line I got bitten by the offloading bug too lol.

[RoobyJuice]

I always feel ridiculous when I admit to this but youtube and the people on it really has helped me to become a more assertive and confident person.

I've still got a long way to go, but I feel so much more 'out there' than I ever was.

So aside from the fact that it has the ability to intefere with a person's life big time. I still think it's fabulous. x

[BlueseyMomma]

Good piece

[Elfins]

Thanks for your comment :)

[npo04]

Nice video work. I never heard of this before. Very interesting.

Later, Gar

[Elfins]

Thanks for your comment :)

[Minniver]

I never had heard of this before. Very informative and at the same time sweet video.

[Elfins]

Thanks Minniver :)

[svartebert]

i just posted a video about some of my symptoms.

i was just wondering if you can watch it and tell me if you think it's EDS or just HMS.

i really want to know.

(posted it a couple of minutes ago so you might have to wait a while)

[Elfins]

Hello, I am unsure to be truthful. I have sent you a private message but you are incredibly double jointed ( hypermobile ) so it would depend on your other symptoms and what amount of pain you may be in?

[amandasfishes]

Don't know if I have EDS but I have joint hypermobility. Just looking at this photo at the end I totally get it. I know how much it hurts to study bc it hurts to hold the books up&u can't find a way to sit that doesn't hurt& there's just no relief.I don't have it as bad as many but I feel for u guys&I know how hard it is to do what seems should be able to be taken for granted,like sitting!! God I wish there was some cure or some supplement,u know?

Best wishes to all in pain. Keep being brave!

[Elfins]

Hiya Amanda, Sorry to hear that you suffer HMS also, its a nightmare isnt it? My daughter is similar that she cant get any relief, well except sleep and even then either a sublaxtion or the pain wakes her so its a never ending circle.

[amandasfishes]

Thank you for the response :) I hope your daughter and you can take it one day at a time... I think I will keep looking for dietary changes and supplements that might help... I feel like that is an area in general that is not explored enough for treatment of diseases and often has promising results. Hopefully it might help a little even for inherited diseases too! who knows

[SondicoDino]

My hyper Mobility hurts makes me hurt lots some days, and other days I cant feel it at all.... When I first found out I had it, I thought it was really cool (This was before I started hurting) It allowed me to lick my elbow haha I still can..... Its a good party trick.... But over time it it just starting to hurt more and more, and I am only 17...

[Elfins]

Sorry to hear from another sufferer :( Thats the trouble with this condition, once the pain sets in, ten to one you will always have problems with pain. They say it can improve with age? I am ever hopeful but havent spoken to one yet that says that it has.

[ReineDeLaSeine14]

I have had killer back pain for about five months or so...which just kept getting worse.

I dislocated my sacroilliac joint...which is typically IMPOSSIBLE to dislocate. It's been out of place around five months or so.

My rheumatologist didn't believe me when I told her what happened. My geneticist did though...luckily my PT was able to put me back together.

I can't believe when people tell me this thing is completely benign. It angers me to no end.

[Elfins]

Hiya Reine :) Dont know how I missed these replies ( oops ) Thats the wonder of the HMS people, they Can and Do dislocate the impossible. We were told that the pelvis is a large bone and you cant dislocate it lol. Well is can dislocate or sublax in a combination of 8 places, funny how most doctors dont know this fact?

[Elfins]

Many thanks for your comments. I dont know offhand whether there is a donation site but will look into it. I do know that work is being done in this field worldwide and it seems different types and sub types of this conditions emerge each year. What makes it difficult too is that types overlap one another so its not a clear cut condition :(

[WretchedLives]

:( this makes me sad. Is there a center where you can make donations to go for studies for a cure?

[IrishGirlieGirl]

I never even knew there was such a thing! God im so ignorant! Thanks for sharing :)

[Elfins]

Thank you for commenting :) Ehlers-Danlos and some of the other known Connective Tissue Disorders are not fun to live with. The sad thing is that getting diagnosed can often take many years as doctors are taught to look for horses and not zebra's, meaning horses are common and zebras are rare. Its a strange analogy but its very much how it is.

[xshineythingsx]

I have EDS.

It affects the ligaments in my heart, the structure of it and my arteries are twisted. I have fractured both my hips and both my shoulders through dislocation and have brittle bones also. Not a single joint hasnt dislocated XD I hate it. My college wont let me on trips cause i'm a 'liability' and they are now saying i may not be able to continue there due to my problem. Its so discriminated against =(

[Elfins]

Just to let you know I have written you a private message to answer this,

Linda

[DragonKhana]

I had mixed feelings when I was diagnosed with EDS. On one hand, I was appalled to realize I had a life-changing, incurable genetic disease (mutants are supposed to get special powers! :P). On the other hand, I felt vindicated... all those years in school, having a hard time writing because my fingers/hand would slip out of place and hurt, teachers calling me a liar... I felt like the diagnosis was a big, loud, "I told you so!" Among various other "I told you so"s

[Elfins]

I love the mutant powers comment lol. I think a lot of people feel a moment of being vindicated and rightly so. My daughter was told for years it was in her head, even when she was dislocating, she was told it simply didnt happen so like you she too felt similar but was angry that she had been put through hell by some medical proffessions all because they were too lazy or cheap to test her thoroughly, but rather keep it in hands of mental health which suited them.

[DragonKhana]

*chuckles* You know, I DO have special mutant powers. Try tying me up! I can wiggle out of Any lock. If a rope fits around my wrist, I can slip my hand through. May dislocate a few things, but hey, it pops in place real easy. Hog tied? Still got lots of room to wiggle in! Hehehe. I've shocked tons of people by escaping knots. So my special mutant power is... party tricks! My secret weakness... randomly failing body parts. Like my back. I'm bed ridden today... but watch out, ropes, tomorrow!

[Elfins]

I had forgotton the old get out of ropes and chains trick hehehe and your right, its a shame about those random failing body parts spoiling things. Sorry to hear your not good today, thats the trouble with this condition, you dont know from one day to the next, one hour to the next even whats going to happen. We spent the afternoon at the hospital discussing spines and the pelvis ( what joy ), will vlog about it when I am not so tired. Feel better soon.

Sending healing hugz

Linda

[troye2407]

Your an angel, I was diagnosed only this week, but have allways had the pain...fingers & toes, family and doctors called me hypocondreact for 6 years, 3 weeks ago my lung collapsed, sent me home for 3 days before xrays, then into ER. Currently getting genetic testing, hoping for type 3, Kindest regards, Jason, Australia. remember we are infinate, forever. Need to talk? Allways here. much respect. Hard as a rock, stong as an oak tree.

[Elfins]

Hi, Sorry you may turn out to be another Eds sufferer but better to know than not. Its so hard getting diagnosed but once you are, at least you have the answers, shame about the cure though ( small moment of humour )Lung collapse is semi common apparently so glad the doctors are taking this seriously enough to get you tested. Remember that Eds 111 doesnt always show up in gene testing but they must have a good idea or they wouldnt be testing you.

Let us know how you get on?

Linda

[loveabeyta]

I have Elhers Danlos Type 1 2 and three, i have been living with it all my life and diagnoised since age 6.

Life has been hard and difficult..and its frustrating when people DONT understand! i will say the disease and all i get are weird looks..its GRAET to know someone is making awareness..i want nothing more then someone say..we found a cure...my father and grandfather died with EDS, and im the only girl only person still alive with EDS in my family..and i dont know who to relate to...

[Elfins]

Aww bless you sweetheart. I know how hard it is to live with the pain and disability of this condition. My heart aches for any child suffering but living with this is can make life so hard. Im my family many of us girls have mild Eds if there is such a thing but my daughter is the one who is severely affected and it breaks my heart to see her suffer. If you ever need to talk, you know where i am. Subscibe or send me a message ok?

[loveabeyta]

thank you so much..i dont know anyone else with this..

[Elfins]

There are others but most are spread far apart. Have you joined one of the online support groups? They have a large one in the USA, UK, Canada etc, and also support groups in different states. We have nothing here so joined the online groups. Its great for support and advice or just to have a moan when you need one :)

[smashdudez]

Hmmm what is the easyest and quickest way to find out ? i'm having Sijd...

[Elfins]

Hi,

Getting diagnosed can be really tricky as Eds is pretty rare although not as rare as the textbooks say, just many are undiagnosed. A Rheumatologist is your first stop but the only way to be fully certain is a Genealogist. Ehlers Danlos type 111 is the only type that doesnt have a full genetic markers so most times it is diagnosed based on symptoms, skin involvement and certain physical tests.

Elfins.

[hypoxd]

I have EDS 3 :(

[Elfins]

I do feel for you as its a nightmare of a condition. As you know everyone suffers this condition differently so on a scale some can be mild others severely affected either way I dont envy anyone with Eds. There are some good online support groups which are packed full of help and advise should you need it.

[ilovejocelynlauren]

i have ehlers danlos syndome as well, it sucks when u cant go out and play sports with your friends, it sux tht ur contstantly thinkinng about if u can do certain things or not, i hate it

[Elfins]

My daughter is the one severely affected although I have Eds too. My heart goes out to all young people suffering from this condition as its hard to live your life having to plan every little thing you do like a military manoeuvre and missing out on so much.

[Elfins]

Sorry to hear you have to go through life with this condition, its a bummer isnt it? Many of the symptoms you have seem to go hand in hand with Eds or you get the diagnosis on top of the Eds, so its not suprising you have a lot to deal with.

[Steveoisminebitch]

oh my god i can't believe there is someone else with this disorder like who is trying to do something about it. i have EDS too!!!!! i also have anorexia nervosa, epilepsy, raynaud's phenonemenon, reflex sympathetic distrophy, obsessive compulsive disorder, schizophrenia, depression and congestive heart failure. my mom is fighting against a lot of insurance companies to get help for this....

[Elfins]

Sorry to hear you have this rotton condition too. I think more than anything all sufferers need understanding and help adjusting to the inpact this condition can have on ones life. Its not easy living in pain and in many cases disability.

*Elfins*

[LilAmigo70]

i have ehlers danlos too, im thankful to God that there ar people who can help me and understand, good to see im not alone

[Radissen1]

If i have EDS but i don't notice it. is that extremely dangerous and how could i find out if i have it or not.

[Elfins]

You would know if you had Ehlers-Danlos Syndrome, there would be some symptom or another which would alert you. There is a difference between double jointedness and the condition called Ehlers-Danlos Syndrome. Do a search on the web and it will show you what to look out for, in the meantime, please dont worry. Many who are double jointed dont have a syndrome or a condition like Ehlers-Danlos, hope that helps :)

[NotaTrollTravlin]

Moving video 5*

I have a family member that lives with pain

Thank you for the sub -I hope my videos bring a smile to your face- I will be watching more of yours soon

Nota

[Elfins]

My heart goes out to anyone who lives in constant daily pain as its not easy. Thank you for your kind comments.

Thanks once again

*Elfins*

[psychopopek]

I have EDS and I also have high copper does anyone else have this and is this normal? Btw wonderful video I wish I knew how to post this on my myspace I would love to post it

love

Dani

[Elfins]

Hi, Thanks for leaving a comment but sorry to hear you also have Eds. I have never heard of high copper? but will do some reading up about it, perhaps others know more? As for putting this on myspace, I think you just copy the code and paste it somewhere on your about me page? Spreading the word is what its all about :)

*Elfins*

[psychopopek]

okay I will try and copy it and see what happens and thank you very much nice video

[Canichenoir]

I have this and had it since I was 14. It is so painful and makes school very difficult sometimes. I'm very lucky to have great staff members and teachers. But I have to say, It turns your world upside down. I worry so much about what it's going to bring next and it totally impacts the way I live. I'm going to graduate this year and I'm terrified about what I'm going to do when I'm all on my own in college.

[Elfins]

*Merry Christmas * I am sorry to hear you are struggling with this terrible condition because your right, it does impact every single thing you do. My daughter can only manage part time school at the moment but its a small improvement on home tutoring which she had for a couple of years, but its still really difficult and painful. Anyway, congratulations on getting to Graduate, thats a huge achievement for someone with Ehlers-Danlos :)

[numbers7ven]

~continued~I'm 28 yrs old and I'm thankful that my doctors are knowledgeable in this disorder.

I wanted to ask you if I may place this video in my blogs. I haven't figured out yet how to make a video yet so I wanted to use yours until then. Again thank you for the video and I do hope your daughter has better days than bad.

[Elfins]

Hi, Many thanks for your kind comments. You have my blessings to use this small piece any way you wish as spreading the word is what its all about.

Warm Blessings

Elfins x

[numbers7ven]

I wanted to say that this is a wonderful video and great for helping spread the knowledge of this terrible disorder.

I myself have EDS vascular type. I also have osteoporosis and osteoarthritis.

[n0460347]

I am a little worried. Since looking for video's about dislocations (due to many of my joints dislocating throughout my life) I found out about EDS. I do have a few signs that I have it, mainly the fact that my shoulder, knee, wrist, and most recently my hip have dislocated. I've just turned 23, and wonder if I have this syndrome...? Any comments would be very useful. Thanks.

[Elfins]

Hi, You could very well have this condition or something similar which would account for the amount of dislocations and problems that you are experiencing. There are Ehlers - Danlos support groups worldwide with lots of information that you can read and also how about getting a proper diagnosis as with many of us thats the most difficult part. If you do a search for Genetics Home Reference it will show you signs and symtoms plus technical info.

Elfins

[n0460347]

Thanks. I'll continue my research...

[Elfins]

your welcome, I would of written more but am limited here to 500 words so if you need to know more etc, just drop me an email message ok?

[ZoeyMacaroni]

Thank you!

[ZoeyMacaroni]

Is anyone on supplements(Follic Acid, Zinc, b's, etc.) how has it helped or not helped?

Is anyone incredibly bright?

Thanks for creating this video!

[Elfins]

Many are on supplements, Do they help? Not really. Most with Eds are smart, it is a Collegan defiency yet some with Eds have affected eyes, hearing, vocal cords and speach, all to do with the laxiity in the connective tissue. It doesnt affect intelligence, just the connective tissue. Hope that helps but anymore questions, then please ask away.

[ZoeyMacaroni]

Thank you for relplying. Did you all see a Geneticist or Orthapediologist first after the Pediatrician? Have you been sent to a Nutritionist?

[Elfins]

We took our daughter to see Prof. R. Grahame who is one of the UK's experts in this type of problem. The Prof is a Rhumatologist. Prof. Bird from Leeds is Geneticist who also deals with Eds in this country. We are due back at Great Ormond Street hospital in 3 weeks time and are hoping to see and nutritionist then.

[RetroKingdomrules]

Okay thanks for making this i know i dont have eds now im just a sick double jointed boy and no im not from that vid with that nicholas kid in it

[ReineDeLaSeine14]

Thanks for making this video...i have EDS too and didn't know until this year. I'm 19.

[EDSGIRL021]

Thank you for showing people what it like to live with eds , i have type 3 of eds and i know what is it like thank you agian . if you ever need i friend i will be here for you :)