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MHE, Multiple Hereditary Exostoses, or Osteochondromatosis

Hi, my name is Bill and I am 64 years old..

I was born with Multiple Hereditary Exostoses, or better known as M.H.E.
Doctors that I went to didn't even know what it was. But, thanks to 2 doctors that I met on the internet, I finally found some information about M.H.E.
On Feb. 8, 1999, I went to a genetics specialist who has been involved in treating it.

What this disease has done to me both physically and emotionally is very hard for me to talk about.
Physically I've always known about my shortcomings. Lots of things other children did, such as sports and all forms of physical activity, I could not participate in. I had to be careful that I didn't break an exostoses or a bone. I would look at other people and see that they didn't have crooked arms and legs. They were of normal height. Their fingers were not nearly as short as mine.

Emotionally it has affected me in relationships with other people and most of my life's endeavors. I have always wondered if I were the only person in the World with this disease. Having never been to a doctor who actually knew what this even was.

About 6 weeks ago, I was in contact with a lady in Oxford, England. I left her an e-mail telling her that I was looking for other people with this problem. About a week later I got an e-mail from a gentleman in Pennsylvania telling me that he wanted my phone number. The lady in Oxford had asked him to call me. He also has M.H.E. I felt like that was one of the best days of my life. Finally finding out I wasn't the only one in the World with this problem.

In talking to him I found that he probably is in worse physical shape than I am. He told me that he has had 7 or 8 operations. Thank God I've never had to be operated on for this disorder. He also gave me some information that I didn't realize. This is when I decided to seek medical help.

THANKS TIM , May God be with you.

He and I e-mail each other about once a week now. When I first heard from him, I thought, "Good, now I could find others with this." He was 38 years old when this page was first made, and I'm the first person he has ever been in contact with that has M.H.E.

I found an M.H.E. family self-help group in the United States and I contacted them. I even called and left my phone number, but I never received any response. My friend says he has had the same problem with the group.

I'm running this web site in the hopes of finding others with this problem so we can talk about what we have gone through and are still going through. If you or someone you know has M.H.E., maybe we can help each other by talking. At the very least, we will know that there is more than just 2 of us in the World.

I don't want you to think that all I do is sit around and worry about M.H.E. I live a full life. I own and run a small business. I have been a salesman all my life. I live in the Midwest. I work from 10 to 16 hours every day and as I said, I enjoy life.

The one thing I miss is knowing other people with M.H.E. These are my innermost thoughts. It has been difficult putting them into words for you. I pray they help you. Again, please contact me if you know any one with this.

Thank you for taking the time to read this.

We have just started a new email list where we can send letters to each other all at once. Just click HERE and type M_H_E into the search then join our list. We have 399 members at this time and adding more daily, so, we are not alone anymore....

We have a chat room that we are in on Saturday nights at 8 p.m. CST. Come on in and CHAT with us.

I am always on AOL instant messenger. My name on it is unkybilly.

I am also on ICQ. My number is 25656289.
If you are on ICQ, send me a message.

And this is a great LINK to another MHE Page. Check it out.

Updated February 28, 2007.