Rune Sedal
Chairman & Webmaster
I'm born in 1961 at the westcoast of Norway. Working 100 % in DnB NOR IT. Married with Laila and we have 3 boys, 2 with Fabry and my wife. We had the diagnosis in 1998 and have been following the process and improvement of Enzyme Replacement Therapy (ERT) closely.
Looking forward to any treatment in future, that can make life easier to live, for those affected. In the meantime, the FIN board wants to give updated information to everyone interested in Fabry disease.
Do not hesitate to take contact by .
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Kees Bosman
Treausure
I am the oldest member off the Board. I was born in 1942 in the Netherlands.In the year 2000, I stopped working, then it was possible for me to take my pension.I am married with Tineke and we have three children. The oldest one is a daughter and two sons.In 1987, my oldest son had the Fabry diagnose and some months later also my wife. Both have had ERT by home-infusion since 2002 and 2004.I am President off the Dutch Fabry patient group called “Fabry Support & Information Group Netherlands (FSIGN) since 2002.
I hope, with this work, to help as much as possible all the Fabry patients world wide.
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Erica Schenk
Vise-Chair
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 an 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 joint the Fabry Support and Information Group Netherlands (FSIGN) as secretary in 2002, in the hope to mean something for companions, the same reason I joint FIN in 2008 Please feel free to contact me by , if you need to talk to an companion, and I' ll try to answer you in my best English.....
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