well they do, coz everyone looks at me and says i look fine, i have such nice skin, and guys like flexible girls (with winking) and i get to do my exams on computers, so what the problem?

the problem is that one of the basic proteins that hold my body together is being made wrong, and there is nothing anyone can do about it, so i basically have arthritis, and i'm 20, and that's not cool.

and if i'm really unlucky (coz 1 in 5000 isn't unlucky enough) i might have the type that effects the collagen in my heart, and then i have a life expectancy of 58 years, which isn't really that long, my mother is older then that, and she's not old yet.

and if i'm not that unlucky i still have pain in all my joints, and bracing, and the busies, everywhere, the busies and the scars, and the people thinking i'm being abused. and not being able to do all the stuff other people can just do, like walk around for more then a few hours, or have a job that involves much talking, or being in the sun for a few minutes, or anything that might hurt me at all (which is ridiculously easy to do), and it will only get worse.

some people end up in wheelchairs, and some dislocate everyday, and some can't work because of the pain. not to mention the problems i might have if i want to give birth at some point (which not so much thinking about right now) and that might not happen to me, but it might, or it might happen to that child i give birth to, which makes me think it might be a bad idea to even think about it in the future. and it's really quite scary, and it sucks

This message has been edited. Last edited by: tearose,

my condolences tearose.

what is the specific name of your condition?

That sounds terrible. I'm 19 and I can't imagine having to deal with those things. Best wishes.

Ehlers-Danlos syndrome, possibly the vascular kind, but hopefully classical or hyperflexible, still need lots of tests to find out.

I can't even imagine how you must feel. Just remember that you will always have love and support from your fellow Brumstixers when you need it.

OMG, there's so many sub variants of it. I'm sure you probably know all the information listed here but since you're not in the US, I thought I'd put the US foundation up here for you.

http://www.ednf.org/

Thanks for that, when i have a moment to breath, what with exams at the moment, i'll have a good look at it, though i've already done a fair bit of reading.

i had to wait 3 months to see a specialist and get a preliminary diagnosis, it just never occurred to me that i might have the vascular type (that can kill you) because i don't have any of the facial features, however apparently having spontaneous bruising and very pale skin and visible veins might be a sign.

the irony of it all is i'm study genetics, but we just know so little about how anything actually applies to people, and my family history is very limited at the moment. i don't have a good relationship with my extended family (they don't like me and my mother, it's not our fault, sometime you can't do anything about the assumptions people make), and my father isn't taking it very well, so he's not much help getting the information i need. if i had a family history i could work out the inheritance in my head, save money on the genetic councilor, but i just need the information.

im so sorry. i wish you the best and hope that this doesnt interfere too much with what you want to do in life. that seems so unfair that anyone should have a disease that would shorten their life. you are a truly amazing person and i wish you the best. -i think this calls for a manditory hug- *hugs*

I'm so sorry to hear that. I can't imagine what it's like to live with such an awful disorder. My good wishes go out to you!

best wishes you are in my thoughts.

Whoa, that is very scary. I will pray that you are not one of the unlucky ones, and that you get things figured out ASAP because not knowing can be the worst.

Hopefully not to scare you further, but I got to meet a lady with Ehlers-Danlos this summer when I worked for an oral maxillofacial surgeon. She had a mild case and no real problems except that she needed to get facelifts every six months b/c the skin always stretched back out. Otherwise, she was happy, healthy, and quite feisty.

I'm so sorry tearose. But you should try really hard not to imagine the worst. I do think there are lots of people who have Ehlers-Danlos in its milder forms and have quite normal lives. It may well be that you are one of those.

And if it turns out there's more to contend with, you will have plenty of time to deal with it after you find out (so no need to think ahead now). Happiness studies have shown that even people who become paraplegic or go blind, though they have a very hard time at first, in the end seem to return to their previous levels of happiness. Humans are amazingly adaptable! People with all kinds of medical conditions find ways of dealing with them and leading very meaningful lives. I'm sorry your family is not being supportive, but don't feel like you are alone in it. There are lots of people who have the same problem, and lots of people who can help you deal with it.

Finally, don't forget how fast medicine is changing. WHO KNOWS what treatments, gene therapy, etc. might be available by the time you're in your 50s!! So, it really is not useful to think that far ahead (even though it's hard not to).

Good luck going though the tough period of getting diagnosed. We're here for you!!

quote:

Originally posted by tearose:
i had to wait 3 months to see a specialist and get a preliminary diagnosis.

tearose-
did you have your appointment yet?

yep, pretty much what was expected, eds, probably the hypermobility type. i've had to have lots of xrays and ultrasounds and all in all it's not too bad, there's some arthritis in my back and "straitening due to severe muscular spasms" whatever that means, but apparently it's not worse then what you'd expect in someone who was my age but played professional sports.

so now it's more a matter of avoiding doing more damage, i'm going to the gym a lot to build up muscles and protect my joints, and have finally got down to a good weight (70kg! go me... i'm 5'9).

it could be a lot worse, i'm gonna need to get my heart checked regularly as i get older to make sure i don't have an vascular symptoms, but it seems unlikely (which is good coz i life expectancy of 49 years is not happy). it really good to know what's happening, being diagnosed doesn't suddenly make me sicker, it just explains why i get hurt so easy and tired so quickly.

thanks for your concern, it really means a lot

Two cliches but I firmly believe in them and think they really do apply to you.

Knowledge is power.
You know what you're dealing with and your taking action.

The mind is a powerful thing.
There are many case studies of people successfully healing themselves. Think positive thoughts and know we're all here for you when you need to vent.