Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 My name is carol and have a daughter michelle with bleph syndrome still find it hard at times . She is a beautiful girl now 18 yrs of age but has severe learning dificulties. would love to contact someone with similar situation . best regards carol taylor x Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 Hi Carol Welcome to the group. The message board seems a bit quiet these days – but that’s not always the case. Where about do you live? I am 46 years old, and I live in London, England. I don’t have any children. I have met about 30 people with BPES over the years. We arrange get-togethers every 9 months or so. I don’t know of anyone who sounds like they are in the same situation as yourself, and your daughter. However, there are several families who have children who have BPES and additional health issues. So I am sure that at some stage somebody will be in touch with you. Take care Shireen From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of carol taylor Sent: 25 April 2007 20:28 To: blepharophimosis Subject: blepharophimosis re contact My name is carol and have a daughter michelle with bleph syndrome still find it hard at times . She is a beautiful girl now 18 yrs of age but has severe learning dificulties. would love to contact someone with similar situation . best regards carol taylor x Ahhh...imagining that irresistible " new car " smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 My name is Mural . I am 60 and with the bleph syndrome. Growing up has been quite a challenge. But I have learnt to overcome. I am a Math teacher and might be able to help your daughter in this area. The learning disability could come from a host of factors. But I am surprised that to date I know of no special glasses that could hide these defects and thus enhance the appearance and boost more confidence. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Hello Carol, Just wanted to say hello and welcome to the group : ) My name's too and my daughter Naomi is 4 years old and have BPES. No one else in my husband's family or mine have BPES as far as we know. As for the glasses mentioned, well Naomi wears a pair because she is long sighted. They happen to magnify the size of her eyes because of the nature of the lenses so Naomi appears to have larger eyes. I'm not very sure about wearing glasses for aesthetic purposes, but I think it is possible. A friend whom I met in this group told me her siblings had those glasses while growing up. Take care : ) Quote Link to comment Share on other sites More sharing options...
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