RE: so pleased i found this site

[Guest guest]

Dear Carol

Welcome to the group. It is nice to meet you and your daughter.

So many of us (who have not got any relatives with BPES) have felt alone - until meeting people in the same situation.

I am 46 years old and the first and only person in my family with BPES. I am sorry but I don't know what a chromosome 3 deletion means, or how that affects your daughter. I am sure that amongst the 500 or so who are members of this site there will be some people who have faced similar experiences as yourself.

Where do you live Carol?

Take care

Shireen

London, England

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of bonoroxybexySent: 10 February 2007 00:11blepharophimosis Subject: blepharophimosis so pleased i found this site

Cant beleive i have found this site i hav ea 18 year old daughter with blepharopphimosis syndrome and a chromosome 3 deletion. I have felt so alone all these years. Would be great to talk to someone in the same situation. Its rather late i must go and will be intouch with others i,m sure. yours CAROL TAYLOR