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Welcome to my Patient Web Page. It has been provided to keep my friends and family updated. I'm a girl from Norway! I have MPS VI, Maroteaux Lamy syndrome. I'm 26 years old, and got my diagnose in 1991 when I was 10 years old. I'e now finally started ERT (Enzyme Replacement Therapy). Its 16 yrs since I got my diagnose, little did we know before that year that I was suffering from a MPS disease.. We just know that I had a heartproblem. In 1991 we got the answer; MPS6. And I know that I'm the only one in Norway who has MPS6 - Maroteaux Lamy.

The picture above is of me at a wedding in august 2008 (08.08.08)

Journal

Wednesday, January 7, 2009 11:30 AM CST

Hi, today I had my ERT number 78! Didnt start until the clock was 10:30 am.. one of the reason was that I came late to the hospital because we have gotten so much snow. I didnt managed to get my car out, so my car had to drag the car with the tractor.

Other reason, I only say pharmacy! lol

I celebrated new years Eve with my brother and uncle. I had a great time!

Tonight alot of snow fell down from the house roof.. and the window in my sleeping room, was broken.. in thousand pieces..

Other than that there isnt much news.

Love from Vibeke

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E-mail Author: vibekehovd@hotmail.com

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