Hey, I've read over a few pages of this board, but I haven't seen anything regarding health insurance. A little background first: I believe I have EDS type 1. My skin pulls at least 6cm off of me everywhere but my hands (3cm there) and I have a Brighton score of 10. Large scars from my childhood traumas still cover my body. I've never dislocated anything that I know of that I couldn't put back in or that was extraordinarily painful.

I thought I would keep this my little secret as I was afraid I'd never be able to purchase health insurance on my own again. After watching Sicko, I've discovered that It will always be a pre-existing condition in my state so I might as well go to the doctor. I've got a couple of questions for those more experienced than myself.

How does insurance without a group plan for EDS work? Am I completely screwed if there is any vascular involvement and I loose my job?

Right now, I only occasionally have sharp pains in my knees, elbows and wrists. I'll groan aloud or make some other noise. Occasionally I will get a dull ache that will last for a day, but goes away when the joint pops or cracks. Does this sound like the beginning of arthritis?

I've *always* swam competitively and been college level good at it. Do you guys think the Doctors are going to want me to give that up? I'm only 23, and the sporadic joint pain is making me wonder... It'd suck to be so arthritic I could hardly move at 40.

The only other thing that really scares me is my arm span is greater than my height, my thumb wraps around my wrist so that it overlaps my pinkie to the first knuckle, and I had a speech impediment when I was young. I'm not overly tall, and my arms are only two or three inches longer than my body. Surely someone would have noticed if I actually had Marfan's, right?

Sometimes depends on the severity of the Marfan's. I have Marfanoid Habitus, meaning i have the same features as you w/arms and stuff but i don't have Marfan.

You might as well get diagnosed. I can't get health insurance on my own due to EDS though...my sister can't either. She couldn't for something as simple as asthma!!!! I was denied due to undxed bowel problems and JRA. So EDS just screwed us more.

The Vascular part is a clincher too...my geneticist says I have VEDS signs (oh crap) so that doesn't look good for me as far as insurance goes! I also have a lot of other medical problems (mostly from the EDS) that impede my ability for insurance.

Man 10 eh...I'm an 8 myself

You def. could have arthritis...i got it when i was nine ...JRA...and may start with OA soon...my mom had OA by age 30.

Also...your doc may ask you to give up competitive swimming...but will still encourage gentle swimming to build your muscles without harming your joints.

Please let me know if i could be of any other help...LOTS of people here have EDS as well.

No idea about the insurance. As for the competitive swimming, whether you give it up or not will depend on your diagnosis and symptoms. As sports go, swimming is about the least damaging there is, but until you know exactly what and where the problem is, there's no way of knowing how much it will affect your swimming.

Thanks for the responses guys. I'm going to the doctor Wednesday... The only bad part about this is I know I have something. Its just a matter of finding out how bad it is

Keep us up to date with how it's going. Best of luck with figuring out what's going on.

The doctor wasn't too bad. The highlights:

The office assistant that took my blood pressure told me I couldn't diagnose myself, which is true. I really wanted to ask her if she could make her pinky touch the top and bottom of her wrist.

The doctor came in with a skeptical look on his face. I could tell he thought he was going to tell me to stop googling so much. I started out by showing him how my skin pulled off of me -- His response was "Wow!". He then drew up some paper work to order some auto immune tests for my joint pain. Finally he asked me to show his medical student. Her response was also "Wow!".

Once the tests come back negative, I get to find out what other fun stuff I'm in for. I guess I'm lucky my skin is so stretchy or I'd never have convinced a Doctor something was wrong.

On another note, I hade my wife watch my strokes while swimming. She noticed I over reach to get a longer pull when doing backstroke. When I correct my stroke to not over extend, it adds a whopping 3 seconds to a 50 meter sprint. Oddly enough my butterfly looks normal.

Thanks for the pointers everyone! I guess I'll check back in after the follow up.

i'm glad your skin stretched so far too...it was one of my claims to fame as well That and sticking my tongue UP my nose...

I find it reassuring to have visible signs for doubtful doctors. Unfortunately, I don't have very stretchy skin, so it's either dislocate a joint or faint. I'm hoping back stroke isn't your main stroke - an extra 3 seconds is very long time on a short sprint.

Sorry i had to laugh here because i usually either end up stretching my skin or showing the doc where my thumb's SUPPOSED to be