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
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