John's Story...
Hello, my name is John Stone and I'm 28 years old. I live in Philadelphia. I've been working in TV and Film for about 7 years now. I first heard of MHE in the fifth grade after my family noticed a slight bend in my arm.

This all happened through a small series of coincidences ending with my Grandmother finding out about the Dupont Institute, located in Delaware.

When I was four, some relatives began to notice that my right arm bent a certain way. The wrong way. I think that since that moment, on a daily basis I've been asked all types of questions about my arm. Sometimes I tell the truth, sometimes I don't, and that's where the fun starts. I'm sure you can relate!

Anyway, back to being four. Some relatives thought I broke my arm and it was never taken care of. I always had trouble with this assumption, since I knew I would remember if I'd broken my arm! This went on until I was in the fifth grade, when one day my arm couldn't bend and I felt extreme pain. I realized I couldn't even hold a basketball like I always wanted, and I couldn't play the drums anymore.

A teacher who saw what was happening just happened to know someone whose kid had the same problem, but with his legs. She told the school nurse who couldn't make out what was wrong. My grandmother and I went to a series of doctors. One finally realized what it was and, lo and behold, a doctor friend of his was conducting a study at the Dupont Institute in Delaware, which wasn't too far away from my home town in Jersey. The doctors were very kind and their sense of humor really helped. By this time all I wanted was a normal arm. Every day there would be bullying and finger pointing. I eventually developed a slight limp as well.  Turned out there was something with my knee, too.  All I wanted was to be normal.

The doctors ran a series of X-rays and found that there were over two-dozen growths throughout my body, mostly in my joints. They then did a battery of tests and found that my arm and knee were the only areas that were really affected by these growths. I was lucky, considering how many there were. They told me to come back in a month, when they would replace a bone in my arm with a metal rod in order to fix its appearance.

A month later I showed up with my bag full of clothing and kissed my relatives goodbye. They stayed at the hotel nearby for the duration of the week I stayed at the hospital. Around five other boys were with me in a room, all for the same reason. It would be amazing if any of these guys were reading this. If they are, they'd remember that we stayed up too late one night, got the nurses mad, and they kept us up most of the next night by keeping the lights on. We were a rowdy bunch, but we were just boys. Anyhow, the next day I went into the O.R. I was put under and woke seemed like a second passed

I saw my arm in its cast. It didn't feel bad. It just felt weak. About an hour later the doctors told me that they decided to break my arm instead of cutting it open. They were going to do the same to my knee, but decided not to. They theorized that if my arm was broken through their procedure, that it would heal correctly.

For the next six weeks I was in a cast. School was a little rough and it was late spring, early in the summer, so wearing a cast wasn't the best thing in the world. Luckily they didn't work on my knee. They gave me some sort of medication to help strengthen it and it worked!

When I returned they undid the cast and my arm could bend again. Though it was a little crooked it wasn't normal, but it was better. I went on to succeed in wrestling, since I switched to my left hand. I couldn't write with my right any more; it doesn't turn that far. I had become a pretty slick wrestler since no one really knew what to do with a lefty. My arm would stiffen every once so often, but it would go away just as quick.

I put up with feeling like an outsider as much as I could and always tried to keep in mind that this experience has only made me stronger. I now work on a lot of documentaries and television shows. I'm also a session drummer and bass player, thanks to the folks at the Dupont Institute. No, I don't work for them! I just owe them for all of my happiness. I make commercials as well, and am looking forward to using whatever resources I can to make MHE better known than it is and raise awareness. If any one has any ideas, I'm all ears! And arms!

And if you're a kid dealing with this, you're nowhere near alone, as I found with this site. This site is a blessing and so are you! So hang in there. If your arm's too crooked to hang, then stand there! If your leg's too bent to stand, then sit there! Thought that would make you laugh!!!

Contact me anytime at or