Hello, my name is Teresa. I was born in June, 1975 in Northern New Jersey. I inherited a bone condition called Osteogenisis Imperfecta, (aka OI) from my father. OI is commonly called "brittle bone disease". There is a defect in the collagen, and the collagen (which is a glue-like protein) holds connective tissue together, and give bones strength. A person with OI has either less collagen or a poorer quality of it. I have the mildest, and most common form-Type 1.
My characteristic features include blue sclera (the whites of my eyes appear blue-gray), loose joints, low muscle tone, and of course a history of multiple fractures. I am 5'4" and 132lb. normal in stature. I walk unassisted, when Im fracture free, but my mother used to tell me I walked different than normal. Like my cousins that also have OI, she would say "loose". Maybe it's just because I'm so cautious, or maybe it has to do with the connective tissue? My hearing is ok to date, but I would like to take some signing classes in prepartion since my father, and my Aunt who also has OI show signs of hearing loss.
I remember my first fracture. My family was walking into a department store, and I tripped on my shoelace walking up the curb, and my father was carrying me through the store over his shoulder and I was screaming, I was only 3 or 4 at the time. I had broken my wrist, I remember it pretty vividly.
I've suffered many fractures, enough that I lost count. I have the entire collection of braces and crutches. I think back to when the dr would ask me if I wanted to keep my casts. Thank the lord I had enough sense not to or, I'd have a collection of those too. I was so happy to be getting rid of them, I never wanted to to take them home.
Overall I lead a pretty healthy lifestyle, and I'm eating smarter and exercising more. I belong to a local gym, and have a stationary bike at home. I've been going to weight watchers for several months because the last 2 winters, I broke my knee, and put on some extra weight. I still hadn't lost the weight I had gained from the previous year. They say that after puberty, your risk of fracture decreases, in my case I would say it isn't true. I think I have had just as many fractures post puberty. I had gym class in only K-3rd grade, and then always had a dr's note. Even then I remember being fearful I would get hit with the ball, or fall. In high school I always used to walk the track, while everyone else did regular sports. I didn't learn to ride a bicycle until I was about 12 or 13, out of fear of loosing control, and falling off. On a daily basis I worry about everything including walking on wet floors to having an accident driving my car, and my airbag deploying. Everyday I'm at risk, and I am extremely cautious in everything I do, (especially in inclement weather) and do not participate in activities that threaten my safety.
There is no cure for OI, only preventative measures. I am currently taking a prescription often given to people with Osteoporosis, called Fosomax. Building up bone density is the treatment recommended for me by my PCP, and Orthopedic Physicians.
|
