Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 This is a message mainly for the people who have joined recently. Hi people Welcome to the group. I thought you might like to know about some good links on the internet. http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html This one is a good starting point. It does have a lot of detailed medical terms, However, it is possible to understand some of it. Also, it is updated regularly. The people who maintain the information are the lab in Belgium that do the tests. Also, being associate with the University of Washington, Seattle, it is considered to be a highly respectable source of information. This site also has information about situations where one parent also has BPES, and situations where neither parent has BPES. (take a look at the chapter on: Risk to Family Members). Another good site is this one: http://www.emedicine.com/ent/topic97.htm The main topic here is surgery. The author's credentials appear to be very impressive. I would recommend that people print these articles and send them to their doctor. Ask your doctor to read it and to go through the topics with you, face to face, and explain what it means. They will be able to skip the items that are detailed medical terms, or of little relevance. Take care Shireen London, England Quote Link to comment Share on other sites More sharing options...
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