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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 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, October 8, 2008 12:21 AM CDT

HI everyone!

ERT#66 :-) Everything went well, nothing special to report. Managed to start at 10:30 am... A late start.. I came to the hospital between 8:00AM and 8:30AM and then I wonder why arent we able to start a bit earlier?? I'm just asking..

On saturday we are going to have a afterparty (from my father's wedding).

Its only 1 week left until I'll be 27 yrs old. Oh I'm getting old... I'm not going to have a big celebration, but there will be a piece of cake or 2 :-)

Love from Vibeke

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Hospital Information:

I live home with my dad, sister and Kermit, my dog.

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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