Sven-Erik's Story

Hi!  My name is Sven-Erik.  My name may sound strange because I live in Norway, a country in the northern part of Europe.  I'm 37 years old, and bumps were discovered on me when I was four years old.  I've had surgery 13 times - to remove a lot of the bumps, increase the length of the achilles, and stop the growth of my right leg for a couple of years.  When I was little I thought I was the only one with bumps...now I know that there's a lot of us, and that's good to know!

I really enjoyed staying at the hospital for surgery.  That made me a little special, and I was allowed to eat a lot of candy, get presents, etc.  I remember one time, the evening before surgery.  I was told to not eat anything prior to the surgery, but I put a lot of candy under the pillows and, when the nurse left after "verifying" that we were sleeping, I started eating all the candy!  After the surgery, when I woke up, I was probably green in the face and all I remember was throwing up a LOT of times!  I remember another time I was in the Hospital when the Christmas days started.  I was told that I could go home for Christmas and come back four or five days later, but I started crying.  I didn't want to go home!  I wanted to see what the hospital Santa was like!  They let me stay, and I remember having a great time at the hospital.

What about pain, people often ask me.  In fact, I have never had any pain involved with my bumps.  All bumps that have been removed were removed because they got too visible/big, etc.

And what about me as an adult?  Well, people can see that I limp a little, and that my right forearm is a little bent.  When I was little, correcting this was a major thing, so it was never done.  If you take a very close look, you may notice that my arms are a little shorter...
"Geeee, I suppose you have a lot of problems with your everyday life??"
No, not at all!  I have one problem now, and that is so minor and silly that I probably shouldn't tell about it...(Promise not to laugh!):
I cannot put my socks on like most other people do it (but I do get them on!).  Another thing is that I'm a little stiff in some joints, but not so much that it keeps me from walking, running, playing soccer, skiing, etc.  I did not participate in gymnastics in school, and maybe you don't either, but I will give you one piece of advice:  Use your body!  Swimming, cycling, running, or whatever you enjoy.  This will make your joints less stiff.

Now I have two kids.  Lars Christian is a boy, age 8, and he does not have MHE.  Ingrid Marie is a girl, age 5, and she has inherited MHE from me.  Our main language is Norwegian, but in a few years she willl learn English and be able to write her story on this wonderful MHE and Me site...
Good luck to all of you!
If you have a question you want to ask or anything, don't hesitate to
contact me! 

sven-eb@online.no

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