What part of OI has affected my life the most?

Other then the general non-education of others about it....

For me, it hasn’t even been the big (obvious things) like breaking or anything. I can get around that. I accept the fact that I have OI and there’s nothing that can be done about it. I accept the fact that I can break anytime anywhere at a moments notice. So I live my life, and if I happen to get hurt (break/fracture/sprain), I just work around it.

But that’s not what has affected me the most. It’s the small little nuisances that on their own wouldn’t be that bad, but combined with everything else, it’s ten times worse.

The ‘OI related’ things. Like being short (even if I am on the tall side for having OI from what I hear), being deaf in one ear, having a speech impediment, having DI (basically OI for the teeth if you didn’t know), having (mild) scoliosis, having un formed ligaments and muscles in some parts of my body, having my bones deformed, but it’s only noticeable on an x-ray, having what can only be described as feeling like its arthritis in my joints if I use them more then ‘normal’, and I’m only 23, having my body slowly deteriorate, bruising easily, vision problems and a bunch of other things that I’ve learned to ignore because they don’t affect me as much as those do.

If I had to pick one thing, I would say having my body deteriorate is what has affected me the most. I know what I used to be able to do, that I’m no longer able too. I worry about what it’s going to be like in five or ten years from now.

So for me, I would say it’s the combination of all the little things, or the fact that my body is slowly detorating that affect me the most. I would be very hard pressed to choose.

I own a group where you can find more information about OI, its rare, uncurable, and genetic,and because of it, we basicly break really easy.