Re: Pictures of Alice and a qusetion to Leelee and others with small children

[Guest guest]

Hi Stina,

Sorry to hear about your loss:( I to, actually had a miscarriage, 4 months before getting pregnant with Ethan:( it was terrible, so after I had Ethan, I thought may-be the miscarriage was something to do with him been born with blephs? but of course it wasn't, I did EVERYTHING right, I don't smoke, drink, took my prenatel vitamins even before I was pregnant! it just shows that whatever you do correctly still doesn't mean anything, I wouldn't change a thing anyway! Ethan is our angel:) He has always been very smiley:)

With the tummy thing, I can't remember if he didn't like it or not, it wasn't a big deal for him, didn't cry to be moved to his back, plus he has never had a head-chin up position, he has always just looked straight ahead which is good, as a lot of bleph people have a chin up posture to see better, he lifts from his eyebrows, and even now running around he looks fine. Our Dr said he will probably do a temporary ptosis surgery when he is 2 now, first he said he would wait til he is about 4ish, but he thinks he will benefit from it in the meantime, as his top eyelid has no movement really, scarey, as it is only 3 months away now! will keep posted on that anyway:)

Talk soon.

Leanne and family:)

-- RE: blepharophimosis Re: News from Caroline and Scandinavia

Hi Ami!

I'm also new to this group. I'm 27 years old. My name is Stina and I live in Sweden and I'm married and have a little girl of 3 months, Alice.

I was born with blepharophimosis. My father has it as well as my brother and sister. And, I'm sorry to say, my little girl has it too...

I have taken her to see a doctor and she will probably have some surgery when she is arond 3 years old. I had surgery when I was 6 and again when I was 17.

I would love to have contact with you, if you want to!

If you are interested you can send me a mail at stina_ls@...

Best wishes StinaAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi Ami

Welcome to the group.

Here are some good sources of information:

http://freespace.virgin.net/andy.bowles/page6.html

You should definitely take a look at the first one, as it is pretty comprehensive.

I recommend that you ask your doctor to refer you to a geneticist so that they can answer any questions you may have.

Take care, Shireen

London

England

-----Original Message-----From: PB2X_Banshee [mailto:pb2x_banshee@...]Sent: 19 October 2004 13:33blepharophimosis Subject: blepharophimosis Re: News from Caroline and ScandinaviaHi I found your post on the group. I was born with blepharophimosis and now i am married and live in southern sweden. would like to chat with people about it. i cant seem to find enough info about the disorder. two years ago i was told that i had premature ovarian failure that is realated to the syndrom. I do hope to hear from you soonAmi

[Guest guest]

Hi Stina, My name is Jill. My Daughters Name is Ruth. She is almost

11 months old. As an infant she hated to be put on her stomach. She

would cry everytime. She was much happier on her back because she

could see tings better. We thought Ruth could see fine but her doctor

suggested she have the temporary eye surgery when she was about 6

months old. It was unbelievable what a different baby she was after

the surgery. She looked at everything like she was seeing it for the

first time. She has always been a happy baby most of the time but she

became a million times happier after the surgery. I guess maybe

because she could see things better. Her pictures are posted on the

sight. Alice is beautiful. How old is she? Ruth is my 4th child but

is the first in our family to have BPES.

> Hi Ami

> Welcome to the group.

> Here are some good sources of information:

>

> http://freespace.virgin.net/andy.bowles/page6.html

>

> You should definitely take a look at the first one, as it is pretty

comprehensive.

>

> I recommend that you ask your doctor to refer you to a geneticist

so that they can answer any questions you may have.

>

> Take care, Shireen

> London

> England

> blepharophimosis Re: News from Caroline and Scandinavia

>

>

>

>

> Hi I found your post on the group. I was born with

blepharophimosis

> and now i am married and live in southern sweden. would like to

> chat with people about it. i cant seem to find enough info about

> the disorder. two years ago i was told that i had premature

ovarian

> failure that is realated to the syndrom. I do hope to hear from

you

> soon

>

> Ami

>

>

>

>