Tina's Story
Hey kids,

First off, I feel bad addressing you as "kids" since MHE is a disease that forces you to grow up quickly, or at least I've had to.

I have a very clear memory of being six years old and sitting in my kitchen eating spaghettios when I got up to go and show my mom the "goose bumps" on my wrist.  Quite clearly there were no goosebumps, but bone spurs.  I was taken to the doctor and diagnosed with Multiple Hereditary Exostoses,or Osteochondromatosis...as it was first introduced to me.

That was when I was in kindergarten.  I was in the second grade when I had my first surgery on my right knee.  I didn't think it was a really big deal.  It was explained to me that I would be asleep and not feel anything but would wake up, be sore and within a few weeks be able to walk without pain again.  To me it was a pretty good deal.  I got treated like a princess and when it was all over, I'd be able to walk.  The scariest part of my first surgery, and what I dislike most today, is the IV.

I'm lucky that of all the surgeries I've had they've only been to remove bothersome spurs, never to lengthen any bones or fix my growth rate.

My next surgery came in sixth grade and was on my right wrist, four years later came the lower inside of my left knee.  Then in rapid succession (about three months apart each) was a major surgery where I was cut open in three different places on my left knee to remove about ten bumps all together, a second surgery on my right wrist, and most recently in April, a final surgery on my right knee.

That brings me up to six surgeries and eight scars overall.

The physical limitations have never really bothered me much.  You always wish that you could be "like the other kids" and run in gym class, or not have to worry about a volley ball landing the wrong way on your wrist.  I always seemed to be envied in ways.  Other kids wished they didn't have to run and do gym classes.

Now I'm about to be a senior in high school.  I won't lie and say that MHE doesn't affect my day-to-day life.  Most of the time I have discomfort from an aching bone, but it tends to be cleared up with some pills.  Being out of gym with a medical waiver has allowed me extra time to take classes that I enjoy and excel in.  When I get asked about the scars on my body and tell people about my disease they show genuine concern.  No one treats me as different or weird.

You get depressed sometimes.  You would give anything to not have bumpy bones or shorter fingers and toes.  Sometimes I do  cry, thinking of the injustice of it all.  Why me?  How come no one else I know has this?  Is there anyone else who understands what I'm going through?

In the past month or so I've learned the answers to all of these questions, and it has helped.  Scientifically, I have MHE because of a genetic mutation.  The real reason is because I can handle it, and I can help others to put it into perspective.  There are other people who have this disease, and they do understand the daily struggle that it is.  There are worse things that could happen to a person.

Every person you will ever meet in your life has a story, an illness, something that holds them back.  Half of the time you won't even be able to tell, they've dealt with it so well.  I've also found that in every person I meet and get to know well, there is one thing in which I find to envy and at least one thing that  I hope would never happen to me.

We all have our baggage.  Mine has a name.  Multiple Hereditary Exostoses.

Tina
Frumpy47@aol.com

Home