By Lin on Wednesday, January 17, 2001 - 05:51 pm:

ok, this is a repost, my apologies if you have already read this, but i didnt get any replies so i am trying again in a better section. most of you probably are familiar with me by now, i post lots =) ok, i was diagnosed with
chondromalacia patella in the ER, when researching that i figured out i had hypermobility syndrome, wow, i
am not alone, i was so happy, figured i prob had eds as well, so did much research on that. saw an
orthopedic surgeon who diagnosed my hms. spoke to him today about seeing a rheumatologist (my gp
refuses to refer me) about ethlers danlos syndrome. he says i dont have it because i dont have skin
involvment. i do though. i said i had the stretchy skin, etc. he pulled the skin lightly on my forearm, and
said it wasnt stretchy. he says to speak to my gp about a refer to a genetist. is this what i need to do? for
the basic symptoms that are listed for ethlers, not counting many other things i can attribute to it, my
main problems are joints popping out all of the place, subluxations and the sensation of joints popping out
all of the place, feeling them slide like crazy from simple movemets. all the double jointedness is me, i have
pale, thin skin, my veins are extremely visable underneath my arm, no EDS people to compare to but on my
knees and elbows my skin is far stretchier (is that a word?) than friends, i bruise easily and it takes forever
to heal, i have many scars from simple incidents, and deep purple stretch marks across my hips. i am 15
years old. I am pretty positive this is EDS and i need to get it checked out, and since their is no expert
besides dr. Grahame, and i am in the US, the next best experts are you guys, experts by first hand
experience. My mom wont help me, she doesnt believe me, automaticaly believes the doctor, and refuses
to spend time reading up on EDS with me. So.... by your expert opinion, do i need to get this checked out?
I am pretty sure this is EDS, pretty darn sure, but always open to suggestions. thanks, and sorry if this
was realy long! Lin

By Sharon on Wednesday, January 17, 2001 - 07:22 pm:

Lin,
I am also relatively new to this forum and also think that I may Have EDS but have no diagnosis, I say that you should believe what you feel as you live in your body and not the doctors, Your Mum probably doesn't mean to not help but a lot of people have been bought up with what the doctors say is gospel and they know everything but those of us with these problems know that that is not true. Maybe you could point your mum to this site where maybe she could talk to other parents. I am assuming that your mum doesn't have EDS or HMS and therefore has no real idea of what you are going through and maybe you need to go out with her to say a cafe and calmly talk to about how you feel both physically and emotionally dealing with EDS/HMS and that her disputing you all of the time makes you feel bad. You are NOT a hyperchondriac and are NOT putting this on no matter what the doctors say you live in your body (Maybe try a new doctor),
Hope this helps if you need someone to talk to then email me. I live in Australia and am 30 years old and like I said I think that I have EDS III as well but have no diagnosis but that I am hypermobile (As if I didn't know)

Stay Positive Sharon :-)

By Lin on Wednesday, January 17, 2001 - 08:37 pm:

i have tried that, me and her dont have a real good relationship. if we are in the same room for more than 10 min without screaming at each other, its a good day. I tried to talk to her about the pain, she told me everyone has pain everyday for some reason or another, i am being a baby. i dont believe that, because my friends were shocked to learn the pain i am in. I know i have EDS, but i cant seem to find a doc that agrees, but thats because my orthopedic surgeon doesnt understand you can EDS without severe skin extensibility, and my family doc knows nothing about EDS or HMS. so i am struggling to get referrals... thanks for the help though! she wont come in here, i have tried, she says she is too busy. i printed out stuff about EDS and talked to her about it all, but she wont listen, she says to leave it up to the doctors, not to diagnose myself. well if i hadnt diagnosed myself HMS i probably wouldnt have gotten the official HMS diagnosis!! arg. jsut venting. thanks!
Lin

By Sheena on Thursday, January 18, 2001 - 07:10 am:

Lin,
My mum also used to tell me that you had to get used to pains, and she always had one pain or another. This left me frustrated, as a child, with nowhere to go. If she always had more pain than I had then I was not allowed to complain to anyone. Also with a very pessimistic outlook on life and getting older. (I am now 50, but still remember this very clearly).

I now think my mum also has HMS! She knows she has a lot of individual medical problems, which she treats seriously, but I don't think she accepts that they are all part of a pattern.

I just wondered if your mum might be similar? If so, you will never win an argument with her. Just wait for the time when you can take responsibility for your own health - I hope it won't be too long.

By the way, why does it matter whether your condition is called HMS or EDS?

By Lin on Thursday, January 18, 2001 - 04:31 pm:

my mom doesnt have HMS, but i believe she may be a hypochondriac. she says she has everything i have, and i dont believe her since she is so NOT understanding of my pain. she doesnt have any symptoms of HMS and EDS except bruises easily and her arches fall over. she is always complaining about one thing or another, and i learned fast not to complain when i am in pain, because she would never hear me out (not saying being called a liar and a hypochondriac at school by gym teachers and students didnt help that) and now i am in much more pain, and believe i could have been diagnosed years ago if i had spoken up for myself. It WILL be a while still before i am responsible for my own health, i am only 15. and it matters because EDS is said to have skin involvemtent while HMS doesnt. I have been diagnosed HMS, but my os believes i dont have EDS, but i dont believe him. I also personally believe HMS and EDS are the same thing, differing only because of changes between individuals with severity of the skin involvement, not with the condition. thanks!
Lin

By El on Sunday, January 21, 2001 - 07:05 am:

I am 26 and have been diagnosed with EDS hypermobility. What state in the US do you live in? I am in GA and I see one at Emory. My mother never understood either and still doesn't. HMS is alot diffret than EDS. EDS is more than just hypermobility. It's very scarry along with the pain. I am looking at total joint replacement now for several of my joints. I wish at your age I had been more knowledge in what I was doing to my body. Boy have I paid for being athletic. Highschool coaches don't have a clue! Oh well if you need someone to talk to you can always email me privatly too.

By Sharon on Sunday, January 21, 2001 - 04:45 pm:

Hi again Lin,
It's sharon again, I am sorry to hear that your mum just wont listen but don't take what she and the kids and teachers at school say to heart. You know and WE know that what you are going through is real, and that you are NOT just winging. As I said before you live in your body and not your mother and not the doctors (it would be nice though if they could for 1 day so that they could feel what you do. Any thats enough of wishful thinking)but maybe you could post a message to other in this board and ask if anyone knows of a knowledgeable doctor of EDs in your area. The other thing is do you have a close relationship with any adult ie. your grandparents, aunt, teacher etc who could help you talk to your mum or your doctor or that you can at least talk to ?
Your mum may or maynot have EDS or any other medical condition but even if she did it may not be as serious or painful as yours andshe really can't understand. But I like you believe that doctors don't know everything and I personally think t aht know very little at all, especially if they cant see it like a cold, cut or broken bone. But maybe thoses of us with HMS or EDS can eductte some of them. And by the way a LOT of people diagnose themselves and then bring it up with doctors and they are CORRECT. Also from what I personally have read EDS doesn't have to have skin involvement and that which some do varies a lot, from stretchy skin, easy bruising, easy scarring etc etc etc.
Keep in touch. this is a great place to meet and talk to others who do understand and will listen no matter what. as I said before you can email me on the above address anytime if you want to talk.
Sharon :-)

By Patty on Tuesday, January 23, 2001 - 08:12 pm:

Hi, Lin. I just want to let you know that my grandfather had obvious HMS/EDS - he was even friends with Mr. Barnum of the circus fame. My dad has no observable problems other than his thumbs. I have more than he does, but the point is that the severity of the hypermobility is not the same even within families. Dad's bladder had a bubble "diverticula" on it and that is an EDS problem. His retina detatched and got holes in it and that is an EDS problem. He's had major colon problems, an EDS problem. I kept bugging my doctors about my many problems, asking about a "common thread" and they kept saying there was none. Now we know very differently. Doctors began suggesting my daughter had EDS when she was 6 or 7. She is obvious. Your mom may have it, but the problems are not so obvious. I am sure she does not mean to be unreasonable (I am a mom and I thot my daughter was lazy when she had a major heart problem that made her exhausted all the time. I feel terrible about my insensitivity now) Be patient with your mom - and honor her.
Something you can try is to get your ortho to write his diagnosis out for you. Then, depending on what state you live in, a public health nurse may be part of your answer. In California, they have a good program for kids. Your school nurse would also be a good resource for help, especially if you print out some articles on both HMS and EDS and help educate her. Be sure they understand that your mom is not helping you with this nor sympathetic to your search for help. See what they can do to help you with your mom AFTER they have studied it out and have some recommendations.
You have to let your mom go right now. Getting a definitive diagnosis would be nice, but even when they do give it there isn't really anything they can do to help you. Hang tight, don't mention it in front of her and wait it out. Time is on your side.

By Lin on Wednesday, January 24, 2001 - 06:22 pm:

i am sorry to be rude, but i am getting frustrated. I dont care about my mothers opinion, thats not why i posted. She doesnt matter, if i want to ask the doc for a refer to a genetist its ok with her. She doesnt care if i try to talk to her about it. I want to know peoples opninion of my symptoms if they sound like eds, not to talk about my mother. i dont get along with her at all, and i dont like to think about her. trust me, you have no idea what my life is like. and trust me, she doesnt have eds or hms. there is a difference from no symtoms and uneasily reconizable symtoms, i didnt post to talk about her. thanks.
Lin

By El on Wednesday, January 24, 2001 - 08:36 pm:

Well, that was my attempt. If you want any help just email be privatly.

By Karen on Thursday, January 25, 2001 - 09:45 am:

For Lin, i had someone from an eds support group
refer me to a specialist on this condition, who is
in Baltimore. She said Dr. Levy ran an EDS study
at the NIH. Howard P. Levy, M.D., Ph.D. Assistant
Professor of Medicine, Johns Hopkins at Green
Spring Station 10755 Falls Rd., Suite 360,
Lutherville, MD 21093. (410) 583-2951

By Kadie on Saturday, July 14, 2001 - 08:24 pm:

my name is kadie, I am 15 years old and i have ehlers danlos syndrome. I was wondering if anyone knows of any good specialists or researchers for eds. Also I was wondering if my age is commom to have ehlers danlos or if all of you are a little older because my doctors say that mine came on early and fast. If anyone can help, i'd really appreciate it. Thank You,
Kadie Las Vegas, NV
KadieAnn15@aol.com

By Silvia on Monday, July 16, 2001 - 08:02 am:

Hi Kadie,

If you read the posts above or other posts on this site you won't feel so alone about your age. Lin, who originally started this post is 15 as well. I myself am 30 years old and started having chronic symptoms last year. However, as a child I do recall having bad leg pains which would make it hard for me to fall asleep sometimes. But then as I got older the leg pains disappeared and now I'm in pain again.

Anyway, you might want to check out www.ednf.org for further information. I don't know of any good specialists on EDS but I do know the NIH will be conducting a study on it. Check out www.clinicaltrials.gov for further info.

Also, what EDS type do you have? I was diagnosed with Benign Congenital Hypermobility by my doctor and from all the reading I've been doing I think it's the same as HMS but don't know if it's the same as EDS3. Anyway, I started prolotherapy and after 2 treatments it has helped me feel better; and even though I'm still in pain it's not as bad as before.

Feel free to e-mail me at any time if you'd like. Also, if you want to learn more about prolotherapy check out www.prolotherapy.com or www.caringmedical.com

By Lin on Monday, July 16, 2001 - 11:15 am:

this is Lin again. i finaly get to see a geneticist on august 3rd. i FINALY saw a doctor that knew what she was doing in checking for joint hypermobility! its realy nice to have someone that believes me. i am 16 now, and still searching for help on pain... all the treatments i have had have failed, and prolotherapy isnt an option for me..
Lin

By Lucy on Sunday, July 22, 2001 - 11:16 pm:

Hi Lin,

I have EDS type 3 (there are 6 types in total) - yes, the symptoms you describe sound in line with EDS type 3. I too saw a top doctor many years ago who contradicted the diagnosis (made by Professor Graham)I told him he was wrong and never went to see him again. Please email if you would like to know more. What area of the country do you live in? Take care and keep strong. Lucy

By Cindy on Wednesday, August 08, 2001 - 08:08 pm:

Help! My 12 year old daughter has been diagnosed with eds and we have no doctors in town who know what to do for her. After years of just treating injury after injury. She hasn't been able to walk since Nov of 2000. I just want to find a doctor who understands and will help us to maybe get her walking if possible.Please feel free to email me with any suggestions. I just feel so lost

By Sharon on Wednesday, August 08, 2001 - 11:25 pm:

Cindy exactly why can't your daughter walk, I am currently in a below the knee walking cast for a recurring ankle sprain and get a brace next week. I can't use crutches because of my shoulder etc (it dislocates very easily). You also didn't say where you were from Cindy? Maybe someone on the board or one of the support groups could point you in the direction of a knowledgeable doctor. I am trying to find a doctor in my area (Canberra, Australia)and I contacted a local support group to get a list or name of doctors in my area.