Hi!
My name is Mike, and I am eight years old. I have a rare bone
disease called Idiopathic Juvenile Osteoporosis—IJO for short.
IJO
is a disease that causes my bones to break easily. Even though
I'm
careful, I've had 17 breaks so far and two of them have actually been
in
my back. Luckily, I'm still able to walk and do a lot of fun
things.
I fell down at school yesterday and broke my knee. If you want
to know who I am, I'm the boy with the cast from his ankle
to his thigh!
My doctors don’t know a lot about my bone disease because it is so rare. Although there's no treatment yet to help with IJO, the doctors say that I might outgrow the problem when I'm a teenager. I sure hope that they're right! *At least* my bone doctor knows how to fix the breaks, and at least people are trying to find a cure, like the doctors at the Shriner's Hospital. My favorite things are beanie babies that keep me company and my stuffed animals like Free Willy the Whale and Chocolate the Bear. I like to play Star Wars and Monopoly type games. T-Ball, too, but since I have IJO, I sometimes have a broken leg or arm during the season. When that happens, I do have a pitch runner or hitter. Sometimes, though, my coach lets me just hit a couple balls which is pretty cool, even though I don’t run around the bases. I also love to swim in my swimming pool and swing on my swing set, but when I have a broken leg it's sort of hard for me to swing. I like going to school. I used to go to Shriner's Hospital once a year,but now I only have to go every other year...some sort of research so that doctors can try to figure out more about IJO. I've never needed to stay in the hospital when I get a broken bone, so at least that part's good, right? Kids don’t tease me at all. When I have a broken bone my classmates are nice to me and I can tell that they're concerned about me. One friend in particular is especially nice to me, which is great because I often get mad when I can’t play at recess or PE…you know, because of broken bones or because the bones just may break if I do too much. I really hate my bone disease and I’m sure other kids with IJO hate it too! Once at school a friend asked me about this yucky bone disease and how I got it. I told her that I was born with it, that things called chemicals in my body got mixed up and didn’t know how to work right. At least that's MY guess. You see, idiopathic means nobody really knows what causes it! My friend Ryan at school is really nice. He plays with me a lot and we are best friends. Ryan plays with me even though I have broken bones. Neither of us like that one bit! Ryan and his friend Brett are really funny! They tell funny jokes and make up funny songs. Me, too! I made up a song about Frosty the Snowman. We have lots of clubs but Brett has never come over to my house. My Mom said that he can come over sometime, though, so I'll tell you if he does.
My family hates it when my bones break because they don't like to see me in pain. Once I broke two bones in my foot at the same time and I had to have four casts on for them to heal. It took 6 months for the bones to get better. This year when I went to Shriner's they made supports to put in my shoes. These supports are plastic and they help to keep my feet from turning funny. The doctors hope this will protect my ankles and heels from breaking because I have broken them so many times already. My mom is just about to start school to become a medical assistant...she sure has 'assisted' me all these years, and has become quite an expert about IJO. No wonder, right?! Now this is the part that really makes me mad. The fractures in my bones don't always show up on the x-rays. I can tell, though, because they hurt, so here's what happens. The doctor puts a cast on for 3 weeks, and if I still hurt when it's taken off, well then I go get a bone scan. This has already happened three times, and guess what... two of those times I did have what's called a 'stress fracture', and I did have to have casts put back on again. You may be thinking that it's called a stress fracture because it drives me crazy when that happens. But if you are, think again. A stress fracture is a teeny tiny break (about the size of a hair). It hurts a lot and besides that, it makes my bone weak. So weak that it's very easy for it to break again. Bet you'd be angry if you got a lot of stress fractures! The last time I had a fracture they didn't even put a cast on my leg. They said if I didn't run or jump for 6 weeks it should heal on it's own. And guess what! The doctors were right. But boy was it hard not to run and jump. I'm not supposed to jump anyway, but I forget sometimes. It sounds
like I always
have something broken, but I don't! There are some people who
have
IJO worse than I do and have had so many broken bones that they just
stopped
counting.
Thanks for visiting! Mike |
|
|
|
Joan
Fleitas, Ed.D., R.N.
Associate
Professor of Nursing, Lehman College, CUNY
Bronx,
New York 10468
Last updated: January 26, 2007