Roger's Story

Hi!  My name is Roger.  I am 48 years old.  My mother, my brother Dave, my sisters Deanna and Elizabeth, and me all have MHE in various degrees.  

My first recollection of having MHE was in the first grade.  Playing on the playground, kids would notice my "extra knee".    I was picked on at school and called a lot of names.  By the sixth grade I was unable to play ball, sit cross-legged, or simply run with my classmates.  I became more withdrawn from socializing with them and was excused from gym class by my doctor.  Funny thing, though, I was good on my bike as long as the bumps didn't hit that center bar on the boy's bike. 

1966 and 1967 brought surgeries to both my legs in the knee area and one on my lower right arm.  I was scared to death that the kids would even dislike me more, or maybe that my legs would be worse (though what could be worse than all that pain and "locked up" knees!).  It turned out that I was partly correct.  The kids never really accepted me because now that I could physically play ball I didn't know how! I was also scared, because I thought to myself, "If they make fun of me now, what's gonna happen with all the scars!"  Well, as time went by, the scars were never a problem.  The pain I felt emotionally AND physically subsided.  By the summer of 1969 I moved from my old town in Western New York State and on to the "Golden State", to Southern California.  One thing I discovered here is that there is such an eclectic mix of people that no one every said anything negative about my leg scars, or how I walked with a "gait".  I still can't sit cross-legged and yes, I could have some more bumps removed if I wanted to, but I don't feel it would improve things much.

I still feel some bumps under my knee.  Do any of you have trouble sitting on bleachers?  I find I need a pad or a hand under there so it doesn't hurt.  I've been told by some doctors that the sitting cross-legged problem is because my hips are a little bit "out of wack".

I do a lot of things that I know would be difficult or nearly impossible if not for the surgery. I love to hike, play the drums, snow ski (yes - there is snow here in the winter!!!), trying to golf, etc.   I can run faster and longer than most others my age.  Tennis, anyone?   I am so happy that my parents had the insight to "Try the surgery!".  Good going, Mom and Dad! By the way, my own son Carl had the same surgery to his long bones in 1984 and 1986!

I know I don't do as well as I could if MHE was not in my life because I do get achy and tired. 

Bye for now, and I hope to hear from you guys and gals soon!


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