Ehlers-Danlos Syndrome Support Group

Alyssa, if you are a girl I will tell you what you already know, people of this age are very cruel and girls are the worst. Try, try, try not to take it personally.

As if you don't have enough to deal with regarding physical limitations and pain, you have an ailment that is virtually "invisible" to the casual observer. Life would be so much better if you had a big fat cast and could get someone out of class early to walk you to the next!

My advice regarding the "friend" issue is to tell them nothing. When you can't or don't feel up to participating in activities (social too) tell them you have plans or blame it on your parents. They are too strict or you are grounded...you get the gist. Few can understand at this age so best just to work around it. You will be out of high school soon and you will say goodbye to fairweather friends. In the real world people are much more understanding and compassionate. In no way do I mean to down play how it feels when your friends don't "get it". It stings..but that is just the way it is.

In the interim, make sure you keep up with strengthening your supporting structures and don't overtax your joints. Athletes such as yourself might also need the competition, consider bicycle and swimming. Low impact, plenty competitive and good social venue.

You are still growning and EDS growing pain is the worst! It will get better I promise.

You can find all sorts of info about EDS and related disorders via computer, but don't limit your support just to those that share your diagnosis. Young people with a different diagnosis are dealing with the same issues you are. Throw out the net and see what you can find.

Just from your post I think you are going to do great.

OR...

Speak to people about the EDS, perhaps this way people will be more understanding and compasionate towards you plus the syndrome will become more recongnised. I suggest that lying about things won't help in the long run and it will make you feel some how ashamed and there is NOTHING to be ashamed about.

I am coming to terms with a change of lifestyle due to EDS3 pain now that I am 33. I have had the pain this last two years and I still get horrid looks when I get out of my car having parked ina a disabled bay. People are ignorant. I think people are quick to judge, but remember WHO REALLY CARES ABOUT WHAT THEY THINK! They dont KNOW YOU! Stay stong and learn your limits. Life is different now and the quicker you accept it the better it will be.

ps. I won medals in javalin and discus when I was at school... I now find it painful to peal a potatoe!

I cant say i know exactly how you feel but i can say i know exactly what your going through. I'm 19 and in college now but grade school and high school were rough for me. I was a competive dancer for years and was in varsity cheerleading all four years of high school. I was diagnosed with EDS when i was 8. Ever since then everything has been a struggle but i try and make the best of everyday. True friends were hard to come by because no one understood. Being made fun of was like second nature to me. I was always in casts and splints, it felt odd not have something holding my body together. But I work hard everyday to be able to do the things i do. Although it comes with constant pain i am proud to say i made the dance team in college and will dance at every home football game next season. I feel that as long as i can still bear it and my body lets me i want to enjoy the thing i love to do most and thats dance. But last semester was tough. I was on the dance team but was always having to sit out because i wasnt used to the rigorous training that college dance teams had to offer. It effected my schooling because the morning after practice i wouldnt be able to walk to class or even get out of bed. I had to come home often to visit the doctors, for x-rays, shots, and checkups, so i decided it would be better to go to a college closer to home. So i been attemting to work out day by day and get myself in the best shape that my body will let me be and i recently tried out for next season at my new college!! just dont give up on the things you love to do. NEVER Quit! its not an option. EDS is a part of who you are embrace it and work around it dont let it take over your life your capable of anything!!! and as for friends i had a few, because most are too immature to understand and accept you for who you are. But those that eventually do will always be there and will do everything for you and will be there when you need them most. I met my best friends in high school and even after going away to college we still hang out and talk very often. they were the ones that convinced me to never quit and to always try. As long as you try and give it your all you can never lose!! Your seem like a Great!! girl! im here if u ever need to talk cuz i know what your going through!! Just remember reach for the moon because even if you fail you'll land among the stars!! much love MiMi

mimi0608 hit a great point about exercizing. It's definitely a good idea to do what you can to strengthen your muscles. The more muscle strength you have, the less your joints will be required to support everything. Your muscles will do a lot of that work and give the joints a chance to relax. Just make sure you find something that is easy on the joints. I go to a gym a few times a week and run on the eliptical machine. Its a good machine for older and overweight people because it's very easy on the knees. I figured if its good for them, its good for me! Also, please don't do too much now because if you do, you'll regret it when you get older. I'm 22 now and the joints that bother me most are the ones I overused when I was younger.

i'm 15 and have EDS too. i haven't been in any sports since i was 11 because of it. I love gymnastics but cant do it because every time i did a back bend i would unwillingly claps. my mom said i couldn't do it any more because she's thinks i'll break my neck and/or become in horrible pain like you. I like sports and expressing myself so i resonantly asked if i could do bale but my mom said no. she said the only thing i could do is swimming, so i recomend you the stop the sports you doing (i think you already said you did) and join swimming, i am since its the only thing i can. I'm sick of falling apart! i do feel your pain because i didn't do sports but i do have it and it sucks, every one on my dad side has it, and he has it really bad, but i have some hope because my uncle on my dad's side has it, he's like 47 and he's in to a ton of stuff like he snow boards all winter and thought me! i hope i never get as bad as my dad because at his age,45, there's no way in hell he could go snow boarding, and FYI my mom would probably never let me do that competitively. it sucks i know! i hope this helped

Hi..I'm 14 with EDS also...I used to be a cheerleader, played softball, basketball, and volleyball....The doctors couldnt find out what was wrong with me for about 2 years and the doctors kept writing me out of school for weeks at a time for pain and to do more tests on me...So finally my mom took me out of school and started homeschooling me...It has got so bad that I have to do all of my work on the computer...So I understand what you are going through...My best friend says she understands but I dont really know if she does...I know it is hard on everyone with it so if you need someone to talk to I am here 4 ya...

Lots of Luv,
Sarah