Paula's Story

My name is Paula.   I am an MHE patient and I have an 8-year-old son, CJ, who also has this condition.   I was diagnosed when I was four years old.  When I was in school, I was quite the target.  I was very small (I only weigh 97 pounds now after having two kids and being 28 years old!), and I had a lot of scars (I've had nine surgeries)!  My heart just aches, sympathizing with all you kids dealing with any differences. I used to lie about my scars, too.  I'd tell people I was in a car accident. It just seemed easier and less questions at the time.  I, too, wore clothes that covered my scars.  I had really bad scars on my right wrist because of several surgical procedures and the way I healed. My scars bothered me so much that my mom promised me plastic surgery for my 18th birthday, to make the scars less noticeable.  However, I was pregnant and couldn't have any surgery then.  After my son was born I decided not to have the plastic surgery after all! I decided that I was going to be proud of my scars - they were part of what made me who I am.  They showed how strong I was. They showed so much more than just scarred skin ... to me.  When I read about kids covering up and being ashamed, it brought back all my own insecurities at that time.

Kids - be proud of yourselves...scars, bumpy bones, and all!  You have so much to be proud of.  You live with things that a lot of people couldn't handle .. and you do it with dignity and compassion!

If I can help even one other person feel better about MHE, then maybe there is some reason behind being born with this!

I'd love to hear from you...

To the MHE and Me Site Map