Does anyone here have this diesease? and what type. My boyfriend has it and I may be pregnant I wondered if anyone had any advice

Dear KitKat,

I have Osteogenesis Imperfecta (O.I). I did not inherit it, the gene mutation occurred spontaneously. As I understand it about half the cases of O.I. occur in such a way while the other half are passed on.
The main thing you need to know is that your boyfriend can pass on the disease. The probability varies depending upon the type of O.I. he has. For instance, with my type there is a 50% chance that each of my children will have O.I. The type I have is the type I pass on, and indeed my one child does have O.I. The other thing to know is that within each type there is a wide range of severity, and although I can only pass on my type, the severity of the symptoms my son has and will have is not necessarily the same as mine. In fact, it appears he has had more fractures at his age than I did at mine. Also, our type affects our teeth (Dentnogenesis Imperfecta) and his teeth are much worse off than mine.
Having said all that, my son and I have had, and will continue to have, productive, and in some way, richer lives because of O.I. It doesn't have to defeat us. I've been lucky enough to have been in a proffessional rock band that sold close to 4 million albums, and I continue to play drums. It's just not so easy moving them.
Anyway, your boyfriend may not know what type of O.I. he has and if not you can find a doctor that can tell him. You can also check out OI.org for more information. And you're both more than welcome to reply to this directly to me if you'd like to know more.
I wish you luck, health, and wisdom at this time.
Sincerely,

Randy Guss

hey kitkat.
My grandson has OI type 3 and has had 27 fractures in the last 5 yrs. He is 6 now. His genetics drs. say that he has a 50% chance of passing on the disorder to any children he may have. The good news is that there are new advancements being made every day and these children live very normal lives. My grandson plays baseball and even though he may have had recent fractures or even be in a cast at the time, it doesn't seem to stop him. In fact we find that it is quite therapeutic for him and teaches tolerance to the other kids as well. Let me know how it goes.
grammytara

Hey Randy.
My grandson Cadyn got OI by 2 mutating genes that then joined. He also did not inherit the disease that we know of and has Dentnogenisis Imperfentca. In fact his drs. referred him for testing for OI before he started fracturing because of his teeth.
Glad to hear you and your son are doing well and I hope that continues in the days and years to come.
grammytara
P.S. what band did you play in? maybe I have heard of it!!!

I've been told I could possibly have OI type 1 and possibly Dentogenesis Imperfecta, but I've never broken a bone in my life (I'm 27), even with bad accidents like falling out of a swing, dropping a heavy weight on my toes, catching a football wrong and having my thumb dislocate. My teeth are really bad though (they didn't form right, many didn't grow out, they're spaced really far apart, they break easily and, my roots are very short), I have them dentally checked up every 3 months, but my dentist has never treated anyone with similar conditions, so I'm not exactly sure what to do at this point.

I'm still searching for what I could possibly have, especially after I wasn't able to match many of my symptoms to people with Arthrogryposis (I was told it was another possibility, same with MED, but I don't have many things in common with the people I've met with the disease).

Would that band happen start like "Toad the Wet..."?