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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 my little dog (Kermit) and me

Journal

Wednesday, July 1, 2009 12:16 AM CDT

Hi!

ERT#103!

Managed to finally start early again, 09:18 AM! And we (my nurses and me) thought that this week we finally have won.. But no, as I lay down waiting for the infusion to start I felt a vibration besides me, yep I'm getting a textmessage on my mobilephone.. It was one of my friends that also gets ERT at the same day, they have started abit earlier than me.

The infusion went well, no problems with the port.

After the infusion I went to the mall to get the time fly, because I was going to pick up Kermit at the hairdresser. Kermit is so good looking now :-) look at my norwegian caringbridgesite to see a picture ( http://www.caringbridge.org/visit/bika )

On monday I started my first week off from work, I'm going to hav at least 4 weeks :) And we have very hot weather, maybe a bit to hot for me.

On saturday I'm going to a outside party! I'm looking forward to that, hope for good weather.

Love from Vibeke

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E-mail Author: vibekehovd@hotmail.com

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