R: New member - new photos

[Guest guest]

Thank you for

your words. It can help us to support our little child growing.

Ciao from Italy!

Olga

-----Messaggio originale-----

Da:

blepharophimosis [mailto:blepharophimosis ] Per conto di

Inviato: mercoledì 9 novembre 2005

7.36

A:

blepharophimosis

Oggetto: blepharophimosis New

member - new photos

Hello everyone, I'm . I'm 21 years old and I

have BPES. I never realized there were so many other people out there who

have eyes just like me! My mom just told me about this group and I'm

pretty excited about it. Since a lot of people in this group seem to be

curious parents who don't know what to expect having a child with BPES, I'd

like to share what my experiences have been.

For the majority of my life, having unique eyes

hasn't even been an issue. I wasn't brought up any differently because of

it, and therefore I had no reason to believe I was different than anyone

else. I did have two surgeries (at ages 2 1/2 and 6), and I only remember

the second one. I don't have any traumatic memories or anything of that

nature from it. I got a walkman as a gift, that's really what I remember

most. And I've always thought that it was pretty neat that I have a scar

on my leg from eye surgery. That one baffles people! Those who are

hesitant about surgery though, I would just like to say that just from my own

personal experiences, it's not really a huge deal. If it can eliminate

some of the chances of the dreaded " what's wrong with your eyes "

question, then I would seriously consider it. That is the only thing that

I have really struggled with at all regarding my eyes - I am sensitive to

that questio n. I recently started substitute teaching elementary

students, and I have gotten asked that exact question from my students at least

eight times in two weeks. Aside from a remark here or there, I haven't

really been asked that question since back when I was IN elementary school, and

I would really be okay if no one ever asked me that question ever again.

But it is a reality that people seem to feel the need to ask it, so I guess I

would just say that that is really the only negative thing that I have

encountered having BPES. I was complaining about the questions to my

mother when I was visiting home this past weekend, and she brought up a very

good point. She asked, " has having eyes like this prevented you from doing

anything in your life? " The answer is, of course not. I'm a

senior in college right now, a few months away from student teaching and I will

graduate in April with a 3.80 GPA. I studied abroad in Spain for half a

year, b ecause I'm a Spanish major. I was very active in high school with

the pom-pon squad and band. I've never had a problem making friends or

fitting in, and I would have to say that I'm pretty " normal. "

So I guess I would just like to offer a message of hope to all those who are

worrying about the implications of BPES right now.

I have uploaded a collection of photos entitled

" - newborn to age 21 " and I tried to show a progression of my

eyes throughout my life. I do jump from age 8 to age 18, but my eyes

didn't change a whole lot in those years.

I encourage anyone who has any questions at all to

contact me.

McManus