Ever seen the movie Unbreakable with Samuel L. Jackson? In the movie, he plays a character named Elijah Price who has a bone disease which causes his bones to be very fragile. The disease is called Osteogenesis Imperfecta, or OI. I have this disease in a milder form, and I am very scared of passing it on to my child if or when I am lucky enough to have one.
The Osteogenesis Imperfecta Foundation's website (www.oif.org) defines OI as "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.'" The disease is hereditary, and it is caused by a mutation that causes problems with the body's ability to produce collagen. It is a common (untrue) myth that if an OI-stricken person just adds more calcium to his or her diet, this will solve the problem.
There are six different "types" of OI, and I am lucky enough to have inherited the least serious form, Type I. Some of the forms result in immediate death, which is scary. I'm not in a wheelchair, I haven't broken hundreds of bones, I am of normal height, and I don't have a barrel ribcage--all symptoms of more serious forms of OI. I have broken quite a few bones, have loose joints, have had three patella realignments, and have a bluish tint to the whites of my eyes known as "blue sclera," but I am fortunate enough to live a relatively normal life.
I was born December 10, 1981, with a broken leg. Two weeks later, on Christmas Day, I broke my other leg. Then I broke my arm, putting me in a body cast when I was just a few months old. This pattern continued until I was about five years old. Because I broke my femur so much as a child, my right leg is a little over an inch longer than my left leg. It's not noticeable to casual observers, but it is there. My right kneecap began dislocating when I was 11 and has continued to cause me problems for 15 years, resulting in three surgeries.
I am very worried about passing this affliction onto my child. Although it is a mild form of the disease, it can still cause a lot of problems, particularly pre-puberty. Kyle and I saw a genetic counselor earlier this year, and she confirmed that we have a 50/50 chance of passing it on. My OB said that we are prime candidates for IVF, so my biggest fear is having twins in body casts! I guess I will just worry about it when it happens!
In other news, we are six days from our wedding, and I started reading the first book in the Twilight series today. I was curious as to what all the fuss is about! I plan on reading that, a book called Dog Days, and Wicked during our honeymoon. So far, I'm about 100 pages in, and I am intrigued!
Sunday, October 12, 2008
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4 comments:
Hi Michele,
I was so happy to find your blog today and wanted to ask if it's ok that I add you to my blogroll? I have OI (Type V) and am 7 months and a week from my own wedding! After that we'll be working on a cookie of our own:-) for a reason that you might want to add into your plans to hurry it along too (as if you need more stress right now!lol!). My dr. suggested that since pregnancy saps bone density for all women and all women lose bone density starting as early as 30-that women with OI try to have children earlier than that if possible...so something else for you to ponder!
One of my best friends (who also has OI) just had a baby last year and she's much more severe than us (the mom not the baby) but her pregnancy went really smoothly. Her little girl doesn't have OI.
SO CONGRATS on your wedding and once you get back and recover from everything-feel free to drop me a line!
hello !I also have OI...not sure what type, a serious one anyway... :) please send me an e-mail...you will find the address on my profile... this is not my real name, obvious....I don't want the whole internet to know my real name I that I have OI...
Kara, I would love to email you, but I can't see your e-mail address for some reason. Please comment again and let me know your e-mail! Nice to meet you!
Hi Michele,
My e-mail is karasheridan@bellsouth.net
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