I'm so happy to have found you all!

[Guest guest]

My name is and I'm 31. All my life i've had different eyes

and the doctors had no idea what was wrong with me, they told mum and

dad that there was no explanation for it. At 13 I had my first

surgery and another at 14. I thought that I was just a one-off. I

have always been a happy confident person and never thought to look

into what was wrong with my eyes. I've lived a great life (and will

continue to do so) I'm happily married to a great husband that told

me the first thing he noticed about me was my gorgeous eyes! On the

30th of Dec 2007 I gave birth to a beautiful baby girl - Imogen.

During the pregancy I was a bit concerned she might get my eyes but

everyone (including the doctors) told me they were confident it

wouldn't happen. Boy were they wrong!

People told me she would grow into her small eyes but I knew better.

For 5 weeks I searched the internet and then a week ago I found

blepharophimosis. I cried for the next 3 days. I couldn't believe

that I was not alone, I felt so bad for my little girl, I felt like a

failure and was so sorry that she was going to get teased and taunted

like I was. I've allowed it to all sink in now and I am so

emotionally happy! Happy that I have a name for it and we're not

alone but most of all I'll have answers for Imogen.

I'm so grateful to have found you all, you all feel like family. I

look forward to the future and hearing your journeys and sharing ours.

[Guest guest]

, welcome to the group. It is an emotional rollercoaster, just to have others to share it with, really helps. I cried and cried when I found the site too, your emotions are not alone. I have BPES and so does my daughter (12), my 2 sons (16,10) dont have it. (just 50/50 chance each pregnancy). The thing for us, is that the children are confident, happy individuals, and to be honest my daughter doesnt even notice people are looking at her. Speaking with another BPES family a few weeks ago, we asked my daughter if she was stared at, picked on because of her eyes, her answer was no, after she moved away, I said I think people do stare, she doesnt notice, actually I dont notice people looking at me... either. All that know me, understand when I say just smile.... This is truly an amazing place, there will all sorts

of experiences to be shared, especially now you have your daughter... it will really help. Anything you want to ask me, please do. Clare Herts UK <claire.haun@...> wrote: My name is and I'm 31. All my life i've had different eyes and the doctors had no idea what was wrong with me, they told mum and dad that there was no explanation for it. At 13 I had my first surgery and another at 14. I thought that I was just a one-off. I have always

been a happy confident person and never thought to look into what was wrong with my eyes. I've lived a great life (and will continue to do so) I'm happily married to a great husband that told me the first thing he noticed about me was my gorgeous eyes! On the 30th of Dec 2007 I gave birth to a beautiful baby girl - Imogen. During the pregancy I was a bit concerned she might get my eyes but everyone (including the doctors) told me they were confident it wouldn't happen. Boy were they wrong!People told me she would grow into her small eyes but I knew better. For 5 weeks I searched the internet and then a week ago I found blepharophimosis. I cried for the next 3 days. I couldn't believe that I was not alone, I felt so bad for my little girl, I felt like a failure and was so sorry that she was going to get teased and taunted like I was. I've allowed it to all sink in now and I am so emotionally happy! Happy that I have a

name for it and we're not alone but most of all I'll have answers for Imogen.I'm so grateful to have found you all, you all feel like family. I look forward to the future and hearing your journeys and sharing ours.

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[Guest guest]

, When my daughter was born almost 19 years ago, I knew something was different. I still remember the pediatrician reminding me that however my bottom felt after delivery, that was probably how my daughter's head felt and why she would not open her eyes. Since she was the second of two children (the first one a son without BPES), I knew I was right in what I felt and knew. I remember wondering what could have happened-what could I or we have done that caused her to be born with such different eyes. I remember tears and so many emotional roller coasters. After about two years where every time we were in public, strangers commented on how tired or sleepy she must be, one trip to an eye doctor who told me not to worry that she "would grow into her eyes", I found a doctor that listened to me, named what we were living with and found me/us an opthalmic plastic surgeon that performed sling surgeries that not only opened up her eyes but

her world as well. No more bumping her head on things she couldn't see abover her line of vision and her mobility/walking became more confident and at the same time both safer and more daring since she could actually see where she was going better. She has worn glasses since around age 4 which included bifocals since age 4 1/2. My daughter has lived through much growing up and much of it has included teasing from her peers throughout her life, stares from strangers that see she is different and don't or can't really open their minds to her unique outward beauty long enough to see how truly gorgeous she is inside and how both compassionate and empathetic she is. Many older adults have often truly appreciated her enormous heart and her intelligence. While that has been a comfort to us and she has brought much joy and love to our family, it is her larger peer group of classmates at school that she often needed more understanding and

acceptance from. Currently we are on the journey to evaluate the possibility of additional corrective surgeries, potential fertility issues and genetic counseling. Our minds sometimes understand the patience needed to move along this path towards knowledge but sometimes the need for answers makes it hard to wait. My thoughts and hopes are with your family as you move forward. <claire.haun@...> wrote: My name is and I'm 31. All my life i've had different eyes and the

doctors had no idea what was wrong with me, they told mum and dad that there was no explanation for it. At 13 I had my first surgery and another at 14. I thought that I was just a one-off. I have always been a happy confident person and never thought to look into what was wrong with my eyes. I've lived a great life (and will continue to do so) I'm happily married to a great husband that told me the first thing he noticed about me was my gorgeous eyes! On the 30th of Dec 2007 I gave birth to a beautiful baby girl - Imogen. During the pregancy I was a bit concerned she might get my eyes but everyone (including the doctors) told me they were confident it wouldn't happen. Boy were they wrong!People told me she would grow into her small eyes but I knew better. For 5 weeks I searched the internet and then a week ago I found blepharophimosis. I cried for the next 3 days. I couldn't believe that I was not alone, I felt so bad

for my little girl, I felt like a failure and was so sorry that she was going to get teased and taunted like I was. I've allowed it to all sink in now and I am so emotionally happy! Happy that I have a name for it and we're not alone but most of all I'll have answers for Imogen.I'm so grateful to have found you all, you all feel like family. I look forward to the future and hearing your journeys and sharing ours.

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[Guest guest]

Hi ,

I felt the same way! Its overwhelming when you discover a place where there are so many people like you, that share in the same experiences you have had your entire life.

My grandmother and a lot of my family are like me, so i wasn't alone in experiencing the phenomenon, but we never had an answer or name for a long time. I've never had surgery, im 20, but im pretty happy with my eyes overall. Boyfriends have said the same thing to me as your has husband said to you! I think its great and its pretty clear he loves you, for you.

I think as a society and culture, every culture idolozies a certain type of beauty. But individual beauty is what has always interested me as a photographer (student, in college). Theres something about seeing something thats not typical, seeing it come into its own grace.

When i see my young cousin who has eyes like me come into herself its something personal, watching her become aware of how she is different. I dont know if this makes any sense, but i think that its a beautiful thing that in todays age of micromanagement and beauty standards that people individually still have the power to make decisions about what they find beautiful.

Anyway, im greatful for the men in my life who have loved me without qualm to my appearance! (well, there were qualms, haha)

But for someone to just tell you that they think you are beautiful, regardless of the circumstance is just awesome, isnt it?

Sorry for the long rambling response but something about your post made me want to post back.

I wish you the best,

h

blepharophimosis From: claire.haun@...Date: Sat, 9 Feb 2008 01:29:19 +0000Subject: blepharophimosis I'm so happy to have found you all!

My name is and I'm 31. All my life i've had different eyes and the doctors had no idea what was wrong with me, they told mum and dad that there was no explanation for it. At 13 I had my first surgery and another at 14. I thought that I was just a one-off. I have always been a happy confident person and never thought to look into what was wrong with my eyes. I've lived a great life (and will continue to do so) I'm happily married to a great husband that told me the first thing he noticed about me was my gorgeous eyes! On the 30th of Dec 2007 I gave birth to a beautiful baby girl - Imogen. During the pregancy I was a bit concerned she might get my eyes but everyone (including the doctors) told me they were confident it wouldn't happen. Boy were they wrong!People told me she would grow into her small eyes but I knew better. For 5 weeks I searched the internet and then a week ago I found blepharophimosis. I cried for the next 3 days. I couldn't believe that I was not alone, I felt so bad for my little girl, I felt like a failure and was so sorry that she was going to get teased and taunted like I was. I've allowed it to all sink in now and I am so emotionally happy! Happy that I have a name for it and we're not alone but most of all I'll have answers for Imogen.I'm so grateful to have found you all, you all feel like family. I look forward to the future and hearing your journeys and sharing ours. Need to know the score, the latest news, or you need your Hotmail®-get your "fix". Check it out.