Hello memebers

[Guest guest]

Hi, my name is Madonna,I have 3 sons and my youngest Albert has ohdo

blepharophimosis like syndrome, he has had surgery on both eyes and has

a sling on his left eye. so far his sight is o.k. may need more surgery

in the near future. Hope to catch up with you, I am a new memeber so

looks like I'm in for a lot lf reading.

[Guest guest]

Hi Madonna

Welcome to our group. There are more than 620 members in this

group. Some are parents, grandparents or relatives of people with BPES. Others,

like myself, are adults with BPES.

Where do you and your family live?

I live in London, England, I am 46 years old, and I have BPES. I

had surgery at 2.5, 12 and 18 years – but the experiences that I had are

not so relevant these days. Surgery has moved on rather a lot and there is

little merit in me providing any more details. I am the only person in my

family who has BPES. I was born in a small town in the middle of a desert part

of Iran, and it was a surprise to me to hear that pretty soon after I was

born they knew what the problem with my eyes was.

Through this group ( and the “BPES Family Network”

which merged with this group a few years ago) I have met several people with

BPES and 3 people with Ohdo. The people in this group are very friendly and

supportive. We look forward to learning more about you and your sons, especially

Albert.

Take care

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of samoanborn

Sent: 03 September 2007 02:52

blepharophimosis

Subject: blepharophimosis Hello memebers

Hi, my name is Madonna,I have 3 sons and my

youngest Albert has ohdo

blepharophimosis like syndrome, he has had surgery on both eyes and has

a sling on his left eye. so far his sight is o.k. may need more surgery

in the near future. Hope to catch up with you, I am a new memeber so

looks like I'm in for a lot lf reading.