Jennifer's Story

Hi, kids!

My name is Jennifer and I'm 24. I was diagnosed with MHE when I was three years old. As a kid I can remember sometimes feeling kind of sad because I was always last to be picked for sports teams (I couldn't throw a ball straight or serve a volleyball very well), and as far as gymnastics the best I could ever do was a somersault. Our school nurse wasn't familiar with my condition, so she wasn't very sympathetic, but all in all I was able to do everything other kids do. I loved riding my bike and playing with my friends...What I want to tell you all is this. Even if sometimes you feel badly because maybe you can't throw as well or run as fast as some of your friends, I'd be willing to bet that there is something else that you do that you do just as well, if not better, than others your age. Maybe you like to paint or draw or write stories, or maybe you are just a better friend to others., knowing what it's like to have to work a little harder at things than others do.

I've only had surgery twice, once on my arm to take off a lump that made it hard for me to hold onto things (I've broken tons of my mom's dishes), and the other time to remove a lump from the middle of my back. For me that was probably as scared as I have ever been, because as rare as MHE is, it is even rarer to find one on the spine. Surgery went really well and I healed very fast.

I've had lots of MRI's and one bone scan, and they don't scare me at all. If you've never had an MRI before, it's like this. You lie on a table and the table moves. Depending on what the doctor wants to see it might take you all the way into what looks like a tunnel, but the whole time someone is talking to you, and they turn the radio on whatever station you want. After the MRI starts the sound is kind of loud, but don't be scared because that is just the machine taking pictures. It doesn't hurt at all. Sometimes they have to give you a shot before an MRI to help the image come out a little clearer, but not always. And if they do have to give you a shot, it stings for just a minute, and that is it. A bone scan is different than an MRI in the way that it takes pictures of your whole body, while an MRI focuses mainly on one certain thing, for example your arm or your leg. Bone scans require an injection, but just like the one that is sometimes required with MRI it only stings for a minute. Bone scans take longer than an MRI because the injection they give takes three hours to work. (Remember it has a long way to go to get throughout your entire body!)  Anyway, during that time you don't have to just sit there, you can go to the cafeteria and eat or maybe go to the gift shop - a time like this is the perfect time to talk mom into a stuffed animal or candy! Then when three hours are up you go and lie on a table and a square-shaped camera moves over you. It never touches your body and it only takes a few minutes, then it's over!! I hope that by reading this, you won't be so afraid if you have to have
one of these tests.  I

By the way, I am studying now to become a nurse so that I can help people who have orthopedic problems - just like us!

If any of you would like to write to me, I'd love to hear from you.


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