interested in meeting families with blepharophimosis in uk

[Guest guest]

Hi my name is Therese I have a 2 year old daughter called Esme with

blepharophimosis.So far she has not had any operations. We have seen

Mr R (MoorFields)andhe has advised that it would be worth

having the sling operation. I currently tape her lids up with

steristrips and feel quite apprehensive about the op and how it seems

to totally change ones appearance plus the scarring and operated

look.At the moment she looks really fine albeit unusual and her vision

which is checked every couple of months seems to be developing well

although slightly long sighted.

I would love to meet other families in the same boat and any that have

had the operation.

we live in Tiverton Devon and are happy to travel anywhere in the uk

Also are there any annual gettogethers happening this year in Britain?

Therese