By Dawn Heuer on Monday, June 05, 2000 - 04:03 pm:

My daughter was diagnosed with E.D.S. type 11 last Aug. She has dislocated her right shoulder 11 times and had to shoulder surgery's. She's dislocated both hips
twice each. She's dislocated her jaw 4 times. She has problems with her neck also. She has dislocated several toes, her right ankle, and her left wrist. Is there any
one out there who can relate. I feel very alone and scared of whats ahead for her.
thanks D.L.

By Debby Keenan on Monday, June 05, 2000 - 04:03 pm:

Dawn..
It is very scary to have an active teen with EDS, my daughter is 16 and just had major knee surgery for the 2nd time. She is on a medical for gym.
She also has MVP, disloctaes her shoudlers daily, hips, jnees, fingers
mid feet dislocatiosn.. has colon problems, asthma, but she is learning her limitations and is handling it quite well.
If you'd like to e-mail me. Feel free, I'm here for ya!

debby

By Dawn Heuer on Monday, June 05, 2000 - 04:03 pm:

Pam and Gwen thank you for your response I really appreciate it. Pam I don't have your E-mail address I would love for my daughter to coresponde with your
daughter. How do I get your E-mail address?

By Pam on Monday, June 05, 2000 - 04:04 pm:

Dawn L,

I have a daughter who just turned 15 and was recently diagnosed with HMS. Although fewer actual dislocations and injuries than you describe, she has a great deal
of pain. I have found this forum to be a wonderful source of information about many things, and a sounding board that will let you "vent" when you need to.

Hang on, there's a future for your daughter, and mine, and all the others suffering. One thing that we're trying to do is find ways to concentrate on LIFE first, and deal
with the pain as part of that life but not life itself. Some days that's harder than others.

If your daughter has an e-mail address and would like to correspond with my Stephanie please e-mail me and we'll get them together.

By Gwen on Monday, June 05, 2000 - 04:04 pm:

Dawn, if you read through earlier postings you will find there are several teenagers with EDS or HMS who post regularly on this forum. Please believe you and your
daughter are not alone. Most people who post to this forum are more than willing to offer advice, understanding and share their experiences. Hang in there!

By Pippa on Saturday, August 05, 2000 - 12:01 pm:

Dear All
I was so relieved after finding this forum. I am 16 and a few months ago, after continually pestering the doctor, I was diagnosed with Hypermobility Syndrome. That was all I was told though, except for him joking that I will be glad of it when I am fifty and still doing the splits whilst all my friends are complaining of stiffs hips. I was sent away and it was only when I found this site that I discovered I wasn't a 'freak', I actually have a genetic disorder and that, better still, there are ways of managing the pain. I had no idea that HMS is an actual recognised Syndrome. My main problem is that my parents don't seem to recognise it either and although, they are usually sympathetic to pain they strongly believe it a stage or growing pains. I would really like to talk to people of the same age with HMS and find out how they deal with it.
Pippa

By Gwen on Saturday, August 05, 2000 - 02:10 pm:

Pippa, I had joint pains as a pre-teen and was told it was 'growing pains'. Sure enough they did settle down to some degree in my late teens and twenties only to come back in full force, along with hypermobility when I was pregnant first time round. I spent years trying to find out what was wrong with me, swallowed I don't know how mant anti-inflammatories and anti-depressants before I was finally diagnosed with Hypermobility Syndrome when in my forties. I can't describe the relief I felt knowing that what I was experiencing had a name. Of course things haven't improved over night. Unlike fairy stories, the evil magician doesn't disappear in a puff of smoke once you learn his name. But knowing what I have, what isn't effective in treating it (anti-inflammatories as it isn't an inflammatory condition) and what is (massage, rest, heat and mild exercise) has made a huge difference. My doctor still doesn't accept the diagnosis and looks at me very suspiciously when I tell him I sprained my wrist lifting a cup or subluxed my knee turning suddenly but I am educating him through sheer persistence.
I'm sorry to hear that your parents have trouble accepting the diagnosis. Have you looked at http://www.hmsa.org which is the British HMS association website. There is an excellent article there on Pain and Hypermobility as well as other useful ones.

By Maggs on Sunday, August 06, 2000 - 01:06 am:

Pippa, the HMSA which Gwen mentions also has a special Teen Page. I am 19 myself, feel free to mail if you want.

By Maggs on Sunday, August 06, 2000 - 01:17 am:

Gwen, I hate to correct you but you've got the wrong URL. The HMSA has been changing their address recently. They can be found at either http://www.hypermobility.org (new site) or at http://www.hmsa.freeserve.co.uk/(old site). The link http://www.hmsa.org leads to the Hawaiian Medical Service Association (I landed there more than once myself).

By Gwen on Sunday, August 06, 2000 - 12:22 pm:

Feel free to correct me Maggs. I must have led many people astray with that URL. Hopefully they have all managed to end up where they were meant to eventually.

By Lin on Wednesday, November 08, 2000 - 05:21 pm:

pippa, i know you wrote on here an aweful long time ago, but i would love to talk to you, e-mail, lin_171@hotmail.com I am 15, and have had many dislocations, partial, i feel the bones slide in and out of place. when complaining i have no reflex in my left arm, and double jointedness, my doctor joked and said i should tell people 'hey look, i was in a car accident, look what i can do' or something like that. my doctor has no clue about hms or eds, i have found it on my own, and pressed him for a referral to an orthopedic surgeon and rheumatologist, but he wouldnt give me one for a rheumatologist, he said it wasnt warrented. (ortho because i was just diagnosed with chondromalacia) when i mentioned hms, he said there is no cure and there is nothing i can do about it so just forget it, it doesnt matter. this angered me, how many others have though there is nothing they can do about it? dont you think this would cause depression? and what about prevention, how many people like me continue to injure themselves because they never learn how to deal with it? sorry, jsut had to vent.... thanks everyone, Lin

By J. Dennis on Friday, December 08, 2000 - 02:44 pm:

my daughter is 18 and has had mutiple dislocations, also has had 5 back surgerys due to extreme scolosis. Would love to get her in touch with other teenagers and young adults with eds or mobility

By Lin on Saturday, December 09, 2000 - 12:24 pm:

i wouldnt mind talking to her, i have minor scoliosis, chondromalacia patella, and some other conditions/injuries form hms. i am 15, my email address is Lin_171@hotmail.com i talk to so many of my friends who still think i am a hypochondriac, that i enjoy talking to people who know what i am going through.
Lin

By Patrina on Monday, December 11, 2000 - 08:57 pm:

Hey, Lin,

Get this! (that's a 40-something's way of saying, this blew my mind - oh, well . . . )

I went (on recommendation of my rheumatologist, who said he couldn't do anything about my HMS; and also on recommendation of my orthopedic oncologist) to a physiatrist. That's a rehab specialist, also often considered pain specialists.

Among other things I was hoping for, and asked for, some way to keep my extremely loose shoulders in check. He asked a bunch of questions, looked me over, told me yes, I do have this (very sympathetically). He then told me there wasn't anything he could do for me, keep taking my pain meds, exercise etc. 'you know what's best for you' and left. I cried. I can't tell you how hard I cried. I cried going home. I just barely pulled myself together to go teach my dog obedience class.

Some of 'em are worse than useless; he was for me on that day. He could have done better, but I also went in with real high hopes (unrealistically so), and as a result crumpled emotionally very easily when it didn't go as I expected. This guy's off my list!

By Lin on Thursday, December 14, 2000 - 02:02 pm:

oh wow. thats got to be terrible. i am trying to see arheumatologist to get diagnosed with EDS, but my gp refuses to refer me, i tried demanding but my mother wasnt behind me. since me ANA and sed rate are nromal, he wont refer me. i wish there was something doctors could do, this needs to be more well known about, i am tired of being in pain. i am glad for this forum so i can talk to other people who know what i mean when talking about dislocating things. when i tell a friend i just dislocated my ankle, or wrist they will jsut stare at me like i am kidding. i know how you feel about theres nothing anyone can do, we all know. i am tired of pain meds and anti inflammatories and physical therapy, it doesnt help. too bad there isnt a specialist that CAN do something for it, even just the pain, because my meds sure dont help alot.
Lin