Hello from France and a question on the bpes

[Guest guest]

Hello, my name is , I'm French, I have 37 years old and

I learned that I had the bpes last July. not surgery but

I have a big problem of sight and I post this message to know

if there is many bpes in this case there, thanks

best regards herve

ps: I hope that write correctly because I don't speak english very well

[Guest guest]

Hi

Welcome to the group. I am not sure of what your vision problems

are, nor can I speculate. However, I am told that some people are in need of

surgery at an early age to prevent vision deterioration. However, this does not

apply to all people. In fact, a few people do not have any surgery at all,

because their appearance is only slightly affected. Each of us is different and

it is best not to generalise.

You may find it useful to take a look at some of the links on

this site:

http://freespace.virgin.net/andy.bowles/index_Page338.htm

The first link is very good. It is not an easy article to understand,

and maybe you can ask a geneticist to translate the relevant parts for you.

The second link has more detailed information about surgery.

I hope that you are able to find a suitably trained surgeon to

help you with your treatment plan. But going back to your original questions, yes,

there are some people who have vision problems, sometimes connected with BPES,

and sometimes in addition to the syndrome. However, I think it would be fair to

say that most people with BPES have something like mild astigmatism, perhaps

short-sighted, maybe problems with sunlight, dry eyes, tear duct problems. Just

to add, I am not a medically trained person, so please consider this information

as helpful recollections of somebody who has simply met more than 30 people

with BPES, and has read a lot on the Internet.

With best wishes

Shireen

(I live in London, England, and I am 46 years old, I am the only

person in my family with BPES, I had surgery at 2.5, 12, and 18 years old)

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of roger_de_france

Sent: 17 May 2007 09:43

blepharophimosis

Subject: blepharophimosis Hello from France and a question on the bpes

Hello, my name is , I'm French, I have 37

years old and

I learned that I had the bpes last July. not surgery but

I have a big problem of sight and I post this message to know

if there is many bpes in this case there, thanks

best regards herve

ps: I hope that write correctly because I don't speak english very well