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A RARE FLOWER

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 29 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 me taken of a friend of mine, here we are on a 7km walk with Kermit.

Journal

Sunday, April 26, 2015 3:39 PM CDT

Hi,
Sorry that I'vent updated in a long time. But I've created a new site. let me know if you want to follow me there. I have to say that it is updated in norwegian.

Love from Vibeke

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Hospital Information:

I live home with my dog, Kermit.

Links:

Frambu   Frambu, centre for rare diseases
MPS/ML- forum   Meet other familys who is involved with the disease
My norwegian webpage   My webpage written in norwegian

E-mail Author: vibekehovd@hotmail.com

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