CptPicard

Hello from another OI-type-3 from Finland! Always interesting to see OI pop up in r/IAmA.

Are you in touch with the American OI community? Have you taken bisphosphonates?

How would you feel about my completely unscientific observation that despite the physical challenges, OI people are typically quite intellectually capable? We show up disproportionately often in a positive light, despite the rarity of the condition. (I feel the need to point out that OI is actually one of the more common "rare" disorders though).

Sorry to hear about your basilar invagination. That one is a nasty complication. :-(

Bisphosphonates really are incredibly useful; I went on Zometa 15 years ago for a while and that stopped my until then pretty much chronic rib fractures. Can't remember the last time I had one. My understanding is that currently severe OI kids are started on them pretty much right away, so your record may no longer hold.

I have also entertained similar thinking to yours; but there are so many other disabilities that limit a child's ability to function normally. Yet it seems to me that it's OI kids in particular who are often some kind of prodigies. I was pretty gifted from the start as well, in particular verbally. It is certainly possible that we need to learn to communicate our needs much faster than other kids.

I understand that in your case it's the neurological issues that is the really nasty shit and it makes your situation grimmer, but I'd like to offer a slightly more positive take on this "many things are off limits" stuff, perhaps for the benefit of other readers of the thread.

It is true that I couldn't dream of being a pro ice hockey player as a kid, but it was very clear to me from an early age that by studying and applying my mind a lot of things would be possible. In my 20s I managed to let some depression and cynicism take hold for a while, but I pulled through that and life has been on a very agreeable upwards trajectory ever since. I'm now 43, I work as a software engineer, live together with my gf (who also has OI, incidentally) and we're always looking forward to the next fascinating evening out in some nice local restaurant when we're not absolutely killing it in our own kitchen...

I would say that one can live a happy, fulfilled life even with OI type 3 provided the condition stabilizes (it often does after teen years) and one is not in chronic pain. These are of course not a given for everyone, unfortunately.

Not necessarily. I have a textbook OI type 3 and lack the blue sclera. They are not properly diagnostic really.

Type 3s often have femur fractures. It's not fun.

It's a bisphosphonate, not calcium