Its funny when I am at work and I say to a MD, "I have OI." and they say "...and ur a NURSE?!" OI is not necessarily a death sentence. Yes OI plagues my family but we have type I, so we have normal height (I'm 5' 4 1/2", my dad who also has OI is 5' 11") and relatively few fractures (I've had roughly 15-20, I've heard of babies days old with fxs in the 50's). I've been looking for persons like myself, who are active, would love to be more active and are in search of information. There isn't a lot out there in terms of information and as health care professionals we have to create this body of knowledge, especially since we have first hand experience. Any information about personal experiences whether it be a patient you have cared for our your own family member. Let's help build the knowledge base to help people who are affected and the OI babies that are yet to come!
Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” The term literally means “bone that is imperfectly made from the beginning of life.” A person is born with this disorder and is affected throughout his or her life time.