My name is Erica Schenk- van de Mheen.
I was born in 1957, in a very small place in Holland where even today a few women wear very special costumes, but no wooden shoes.
I' am married, and we have two daughters, and we are living in Fryslân, in the North of Holland
My mother was diagnosed with Fabry disease when she was about 40 years, she has always been very sick and died at the age of 57 of renal- and hart- insufficiency.
My sister (1954) and I are also affected with Fabry disease, just like my sisters son (1976) and both my daughters. (born 1984 and 1991)
The youngest already suffered a little stroke and is since June 2007 on enzyme replacement therapy. (ERT). I had a TIA and also had a CVA, so I started ERT January 2002, to make sure that no more damage was done by Fabry.
Because I wanted to help my children for the future, and wanted to know all about the disease, I joined the Fabry Support and Information Group Netherlands (FSIGN) as secretary in 2002, in the hope to mean something for companions, the same reason I joined FIN in 2008. Please feel free to contact me by , if you need to talk to a companion, and I' ll try to answer you in my best English.....