Mike's Story

My name is Mike.  I am 44 years old, and I have MHE.  Neither of my parents has it, but supposedly each of my granddads might have had a mild form of the disease.  I have two brothers and two sisters.  One brother has MHE bad, one sister has a mild case, and the rest show no signs of the disease.  Each of my sisters has two kids, and they are all disease free.  I've had two surgeries for MHE.  One took a golf-ball sized tumor out of my hip and it took me six months to walk again.  I have felt isolated and alone  by this disease.  When I was in school I was teased a lot and it felt bad. That was over 30 years ago.  Now, when people ask me about what I have, I tell them the truth, that I have a bone disease.  Lots of people want to get to know me and they care and want to help.  In my experience, more of the people wanted to help me than those that wished me harm. 

The one message that I want to share with you is that the world is still open to you and you can still have a full life.  You may not be as good in sports as other kids, but you'll have gifts to offer in other ways.  

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