Re: BPES does not discriminate....

December 23, 2005

I totally agree with this posting:) Our son is no different developmentally, physically, mentally than our 1st son without bleph, he just has smaller eyes:) He is turning 3 next month, and has just gotten into the toilet training the past couple of weeks, (before this he just refused to sit on the toilet!) he is doing SO well! He tells us he needs to go toilet and do wees, and yesterday he told us he needed to do *poos* and he did!, it is so exciting, brought tears to my eyes:) Seeing your children overcome those obstacles of *firsts* is sooooo awesome and rewarding:)

Everyone have wonderful xmas and new year from the Costello family (NZ)

-- blepharophimosis BPES does not discriminate....

It's been a long time that I've visited this group and recently I

have been catching up on the postings. I just love this group and

love how supportive all the members can be. Both my daughter and I

have BPES, along with my father and 2 older sisters. We wish that

this group existed during our time! I do feel fortunate that it

exists for my daughter.

Some of the postings I've read so far is a bit disturbing. There

are couple of postings where BPES is described to be

a "disability". Another posting wrote if it is related to Asians or

even to orphans. Other postings go as far if BPES is related to the

child's weight!

I would like to say from experience, that BPES does not

discriminate. It is not an Asian, nor an orphan thing. It is not a

disability. It is not a cause for low weights in children.

Children with BPES are normal children. My daughter and your

daugthers and sons are normal kids. And BPES is really nothing. If

we emphasize too much on the negative, then we are teaching our

children the wrong thing.

What BPES is a genetic anomaly. BPES means small eyes. BPES means

droopy eyelids. And BPES does not mean our kids will live unhappy,

unhealthy lives. I grew up happily with my small eyes and so will

my daughter. BPES is cosmetic.

I love how there are photos that show different races across the

world. From US, Singapore, to Europe, to Australia. These photos

and families are our tools to teach our children with bleph that

they are not alone and that they WILL be ok. Perhaps what was once

a "rare" disorder is no longer true. The growth of this group shows

how we are not alone.

So please believe in the positive of BPES and show your kids the

beauty they possess in those little eyes!

Merry Christmas to everyone in this group!

December 24, 2005

BRAVO!!!!!!!! i agree totally. Have a wonderful holiday ~Sharon minnielin202 <minnielin202@...> wrote: It's been a long time that I've visited this group and recently I have been catching up on the postings. I just love this group and love how supportive all the members can be. Both my daughter and I have BPES, along with my father and 2 older sisters. We wish that this group existed during our time! I do feel fortunate that it exists for my daughter.Some of the postings I've read so far is a bit disturbing. There are couple of postings where BPES is described to be a "disability". Another posting wrote if it is related to Asians or even to orphans. Other postings go as far if BPES is related to the child's weight!I would like to say from

experience, that BPES does not discriminate. It is not an Asian, nor an orphan thing. It is not a disability. It is not a cause for low weights in children. Children with BPES are normal children. My daughter and your daugthers and sons are normal kids. And BPES is really nothing. If we emphasize too much on the negative, then we are teaching our children the wrong thing. What BPES is a genetic anomaly. BPES means small eyes. BPES means droopy eyelids. And BPES does not mean our kids will live unhappy, unhealthy lives. I grew up happily with my small eyes and so will my daughter. BPES is cosmetic. I love how there are photos that show different races across the world. From US, Singapore, to Europe, to Australia. These photos and families are our tools to teach our children with bleph that they are not alone and that

they WILL be ok. Perhaps what was once a "rare" disorder is no longer true. The growth of this group shows how we are not alone. So please believe in the positive of BPES and show your kids the beauty they possess in those little eyes!Merry Christmas to everyone in this group! <a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>

for Good - Make a difference this year.

December 24, 2005

I absolutely agree with Min too! Our Micah was a

" waiting child " because he was " special needs " . This

kid is so NOT special needs! He is as smart as a

whip, developmentally right on track both mentally and

physically, and just a doll on top of that! And

honestly, since his scars around his eyes are no

longer red - no one ever asks about them. Seriously.

I don't get any questions on his eyes - just funny

looks directed toward the blonde woman with all of the

Asian kids.

Wishing you all a VERY MERRY CHRISTMAS! May the love

and spirit of the season bless you and your families.

Love,

April, wife to Jon

Mommy to Mira, Micah & Misha

--- Sharon A <besilly12000@...> wrote:

> BRAVO!!!!!!!! i agree totally. Have a wonderful

> holiday ~Sharon

>

> minnielin202 <minnielin202@...> wrote: It's

> been a long time that I've visited this group and

> recently I

> have been catching up on the postings. I just love

> this group and

> love how supportive all the members can be. Both my

> daughter and I

> have BPES, along with my father and 2 older sisters.

> We wish that

> this group existed during our time! I do feel

> fortunate that it

> exists for my daughter.

>

> Some of the postings I've read so far is a bit

> disturbing. There

> are couple of postings where BPES is described to be

>

> a " disability " . Another posting wrote if it is

> related to Asians or

> even to orphans. Other postings go as far if BPES is

> related to the

> child's weight!

>

> I would like to say from experience, that BPES does

> not

> discriminate. It is not an Asian, nor an orphan

> thing. It is not a

> disability. It is not a cause for low weights in

> children.

> Children with BPES are normal children. My daughter

> and your

> daugthers and sons are normal kids. And BPES is

> really nothing. If

> we emphasize too much on the negative, then we are

> teaching our

> children the wrong thing.

>

> What BPES is a genetic anomaly. BPES means small

> eyes. BPES means

> droopy eyelids. And BPES does not mean our kids

> will live unhappy,

> unhealthy lives. I grew up happily with my small

> eyes and so will

> my daughter. BPES is cosmetic.

>

> I love how there are photos that show different

> races across the

> world. From US, Singapore, to Europe, to Australia.

> These photos

> and families are our tools to teach our children

> with bleph that

> they are not alone and that they WILL be ok.

> Perhaps what was once

> a " rare " disorder is no longer true. The growth of

> this group shows

> how we are not alone.

>

> So please believe in the positive of BPES and show

> your kids the

> beauty they possess in those little eyes!

>

> Merry Christmas to everyone in this group!

>

December 24, 2005

Beautifully said! And I completely agree with you when you say you

wish this group existed during our younger days. If only I had known

someone else out there like me when I was growing up

But there is so much support and sincere caring that exists in this

group, and I know this is a great comfort to those parents of kids

with BPES, going through this for the first time themselves.

Bravo, and hugs to you all!

Merry Christmas everyone,

Loka

>

> It's been a long time that I've visited this group and recently I

> have been catching up on the postings. I just love this group and

> love how supportive all the members can be. Both my daughter and I

> have BPES, along with my father and 2 older sisters. We wish that

> this group existed during our time! I do feel fortunate that it

> exists for my daughter.

>

> Some of the postings I've read so far is a bit disturbing. There

> are couple of postings where BPES is described to be

> a " disability " . Another posting wrote if it is related to Asians

or

> even to orphans. Other postings go as far if BPES is related to the

> child's weight!

>

> I would like to say from experience, that BPES does not

> discriminate. It is not an Asian, nor an orphan thing. It is not

a

> disability. It is not a cause for low weights in children.

> Children with BPES are normal children. My daughter and your

> daugthers and sons are normal kids. And BPES is really nothing.

If

> we emphasize too much on the negative, then we are teaching our

> children the wrong thing.

>

> What BPES is a genetic anomaly. BPES means small eyes. BPES means

> droopy eyelids. And BPES does not mean our kids will live unhappy,

> unhealthy lives. I grew up happily with my small eyes and so will

> my daughter. BPES is cosmetic.

>

> I love how there are photos that show different races across the

> world. From US, Singapore, to Europe, to Australia. These photos

> and families are our tools to teach our children with bleph that

> they are not alone and that they WILL be ok. Perhaps what was once

> a " rare " disorder is no longer true. The growth of this group

shows

> how we are not alone.

>

> So please believe in the positive of BPES and show your kids the

> beauty they possess in those little eyes!

>

> Merry Christmas to everyone in this group!

>

December 26, 2005

Hi all

I also agree with you Min on your posting - it was well put. You`re

right it would have been great to have this group around when I was

growing up, not just for myself, but for my parents who had only ever

seen it once before, & that person was `considered` to be mentally

deficient by the ignorant public. This was back in the late 50`s &

60`s.

haven`t seen you here for a while Min & have thought of you from time

to time........

I think its great that people on this group are organising meetings

with each other - that is such a great support - keep it up.

All the best for the new year & 2006.

Maree

>

> It's been a long time that I've visited this group and recently I

> have been catching up on the postings. I just love this group and

> love how supportive all the members can be. Both my daughter and I

> have BPES, along with my father and 2 older sisters. We wish that

> this group existed during our time! I do feel fortunate that it

> exists for my daughter.

>

> Some of the postings I've read so far is a bit disturbing. There

> are couple of postings where BPES is described to be

> a " disability " . Another posting wrote if it is related to Asians

or

> even to orphans. Other postings go as far if BPES is related to the

> child's weight!

>

> I would like to say from experience, that BPES does not

> discriminate. It is not an Asian, nor an orphan thing. It is not

a

> disability. It is not a cause for low weights in children.

> Children with BPES are normal children. My daughter and your

> daugthers and sons are normal kids. And BPES is really nothing.

If

> we emphasize too much on the negative, then we are teaching our

> children the wrong thing.

>

> What BPES is a genetic anomaly. BPES means small eyes. BPES means

> droopy eyelids. And BPES does not mean our kids will live unhappy,

> unhealthy lives. I grew up happily with my small eyes and so will

> my daughter. BPES is cosmetic.

>

> I love how there are photos that show different races across the

> world. From US, Singapore, to Europe, to Australia. These photos

> and families are our tools to teach our children with bleph that

> they are not alone and that they WILL be ok. Perhaps what was once

> a " rare " disorder is no longer true. The growth of this group

shows

> how we are not alone.

>

> So please believe in the positive of BPES and show your kids the

> beauty they possess in those little eyes!

>

> Merry Christmas to everyone in this group!

>

December 29, 2005

Dear Minnie, I also applaud you! Thank you for all you wrote. If you've read anything that I've written about my daughter, (20), you'll know that I've only been on this site since early November and my daughter is my life. She's beautiful, talented, smart, and a devout Christian who is trying very patiently to wait for the right man to come along and love her for who she is inside and outside, too. Her surgeries were done at age 5 and six months later when she was 6. With all the new technologies, study and research I'm glad they have come up with a new way of doing the slings. A less invasive way, for sure. 's recovery on her leg (removal of fascia) was just as traumatic if not more so than the eyes themselves. It's so awesome that BPES is NOT discriminatory. It goes to show we are all God's

children. BPES is rare but truly this site proves that there are a lot more people out there with this gift than I ever thought imaginable. The surgeries have helped my daughter, but there are still those who can't help themselves and have to stare or make comments. She is strong and has great comebacks, like "thank you!" God Bless you and everyone on this site. I feel so blessed that I found this site and can write about things that I've experienced and read about everyone elses, too! Merry Christmas to all and Happy New Year! Love, Terry Ann Helgestad minnielin202 <minnielin202@...> wrote: It's been a long time that I've visited this group and recently I have been catching up on the postings. I just

love this group and love how supportive all the members can be. Both my daughter and I have BPES, along with my father and 2 older sisters. We wish that this group existed during our time! I do feel fortunate that it exists for my daughter.Some of the postings I've read so far is a bit disturbing. There are couple of postings where BPES is described to be a "disability". Another posting wrote if it is related to Asians or even to orphans. Other postings go as far if BPES is related to the child's weight!I would like to say from experience, that BPES does not discriminate. It is not an Asian, nor an orphan thing. It is not a disability. It is not a cause for low weights in children. Children with BPES are normal children. My daughter and your daugthers and sons are normal kids. And BPES is really nothing. If we emphasize too much on the negative,

then we are teaching our children the wrong thing. What BPES is a genetic anomaly. BPES means small eyes. BPES means droopy eyelids. And BPES does not mean our kids will live unhappy, unhealthy lives. I grew up happily with my small eyes and so will my daughter. BPES is cosmetic. I love how there are photos that show different races across the world. From US, Singapore, to Europe, to Australia. These photos and families are our tools to teach our children with bleph that they are not alone and that they WILL be ok. Perhaps what was once a "rare" disorder is no longer true. The growth of this group shows how we are not alone. So please believe in the positive of BPES and show your kids the beauty they possess in those little eyes!Merry Christmas to everyone in this group!

December 29, 2005

Dear Terry Ann,

I don´t mind if your daughter is a devout Christian or your own believings,

they are both private, and of course I repect them. But I don´t like at all

that you say that BPES is a gift. It is not.

BPES alters the health state of people (you can read the WHO definition of

health). There is no disease or malformation, or functional alteration that

is a gift or a punishment.

Happy New Year

>From: Terry Helgestad <terryahelge@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis BPES does not discriminate....

>Date: Wed, 28 Dec 2005 17:23:30 -0800 (PST)

>

>Dear Minnie,

> I also applaud you! Thank you for all you wrote. If you've read

>anything that I've written about my daughter, (20), you'll know

>that I've only been on this site since early November and my daughter is my

>life. She's beautiful, talented, smart, and a devout Christian who is

>trying very patiently to wait for the right man to come along and love her

>for who she is inside and outside, too. Her surgeries were done at age 5

>and six months later when she was 6. With all the new technologies, study

>and research I'm glad they have come up with a new way of doing the slings.

> A less invasive way, for sure. 's recovery on her leg (removal of

>fascia) was just as traumatic if not more so than the eyes themselves.

> It's so awesome that BPES is NOT discriminatory. It goes to show

>we are all God's children. BPES is rare but truly this site proves that

>there are a lot more people out there with this gift than I ever thought

>imaginable. The surgeries have helped my daughter, but there are still

>those who can't help themselves and have to stare or make comments. She is

>strong and has great comebacks, like " thank you! "

> God Bless you and everyone on this site. I feel so blessed that I

>found this site and can write about things that I've experienced and read

>about everyone elses, too!

> Merry Christmas to all and Happy New Year! Love, Terry Ann Helgestad

>

>minnielin202 <minnielin202@...> wrote:

> It's been a long time that I've visited this group and recently I

>have been catching up on the postings. I just love this group and

>love how supportive all the members can be. Both my daughter and I

>have BPES, along with my father and 2 older sisters. We wish that

>this group existed during our time! I do feel fortunate that it

>exists for my daughter.

>

>Some of the postings I've read so far is a bit disturbing. There

>are couple of postings where BPES is described to be

>a " disability " . Another posting wrote if it is related to Asians or

>even to orphans. Other postings go as far if BPES is related to the

>child's weight!

>

>I would like to say from experience, that BPES does not

>discriminate. It is not an Asian, nor an orphan thing. It is not a

>disability. It is not a cause for low weights in children.

>Children with BPES are normal children. My daughter and your

>daugthers and sons are normal kids. And BPES is really nothing. If

>we emphasize too much on the negative, then we are teaching our

>children the wrong thing.

>

>What BPES is a genetic anomaly. BPES means small eyes. BPES means

>droopy eyelids. And BPES does not mean our kids will live unhappy,

>unhealthy lives. I grew up happily with my small eyes and so will

>my daughter. BPES is cosmetic.

>

>I love how there are photos that show different races across the

>world. From US, Singapore, to Europe, to Australia. These photos

>and families are our tools to teach our children with bleph that

>they are not alone and that they WILL be ok. Perhaps what was once

>a " rare " disorder is no longer true. The growth of this group shows

>how we are not alone.

>

>So please believe in the positive of BPES and show your kids the

>beauty they possess in those little eyes!

>

>Merry Christmas to everyone in this group!

>

December 29, 2005

Hello all

This is such a sensitive and personal issue to us all, because even

though we or a loved one have BPES, we are all different people with

different experiences who understand ourselves and the world in

different ways. If it helps to think of BPES as a gift, then go

ahead. If you feel justified in calling it a disability, then that's

okay, too. I don't see it as a gift, certainly in my daughter's

young life it has been an obstacle, but that doesn't mean it will

always be.

As a person with BPES, I wish people just didn't notice it or feel

they had to categorize me in some way. My neighbor said to me,

what's the big deal, why do you worry about your daughter so much,

once you explain it people accept it. And I said, exactly, you walk

out your front door, and you are certain the world accepts you, why

do I have to explain my existence (or my daughter's) to you or

anyone to gain what most people already have. She really couldn't

have found a better way to explain it.

It is different to me now that I have a daughter, it forces me to

see the ways BPES has shaped my personality and it forces me to see

that if people are staring at her, well they are staring at me, too.

It's less noticeable on an adult than a little child.

I think as a kid I just tuned people out, sometimes people imply

that they think Lily is mentally challenged, amazingly it doesn't

upset me. Once as a young woman a silly man said to me, wow I didn't

know people with down's syndrome could be smart, I thought they were

all retarded. It shocked me at first but the silliness made me laugh

so hard. I said wow I am a really unique specimen.

I don't mind having BPES, I only wish it wasn't " autosomal dominant "

I wish I wouldn't keep passing it on, now facing such a hard choice

of whether or not to have more children.

Beth

> > It's been a long time that I've visited this group and

recently I

> >have been catching up on the postings. I just love this group and

> >love how supportive all the members can be. Both my daughter and

I

> >have BPES, along with my father and 2 older sisters. We wish that

> >this group existed during our time! I do feel fortunate that it

> >exists for my daughter.

> >

> >Some of the postings I've read so far is a bit disturbing. There

> >are couple of postings where BPES is described to be

> >a " disability " . Another posting wrote if it is related to Asians

or

> >even to orphans. Other postings go as far if BPES is related to

the

> >child's weight!

> >

> >I would like to say from experience, that BPES does not

> >discriminate. It is not an Asian, nor an orphan thing. It is

not a

> >disability. It is not a cause for low weights in children.

> >Children with BPES are normal children. My daughter and your

> >daugthers and sons are normal kids. And BPES is really nothing.

If

> >we emphasize too much on the negative, then we are teaching our

> >children the wrong thing.

> >

> >What BPES is a genetic anomaly. BPES means small eyes. BPES

means

> >droopy eyelids. And BPES does not mean our kids will live

unhappy,

> >unhealthy lives. I grew up happily with my small eyes and so will

> >my daughter. BPES is cosmetic.

> >

> >I love how there are photos that show different races across the

> >world. From US, Singapore, to Europe, to Australia. These photos

> >and families are our tools to teach our children with bleph that

> >they are not alone and that they WILL be ok. Perhaps what was

once

> >a " rare " disorder is no longer true. The growth of this group

shows

> >how we are not alone.

> >

> >So please believe in the positive of BPES and show your kids the

> >beauty they possess in those little eyes!

> >

> >Merry Christmas to everyone in this group!

> >

December 31, 2005

Beth, I always enjoy reading your posts...tears here. I totally understand where you are coming from about explaining yourself, i dislike that part very much...but i have a funny story that just happened today ... i was in the bathroom at the mall changing ...a young lady, maybe 20 was washing her hands and turned to me and said " I just love your daughters eyes, she is truly unique, she looks a little Asian" to that I chuckled and said to get this look she has had 2 surgeries ...and we began to talk and i shortly explained it to her ...as we were walking out she was holding the door for me and adriana and another woman coming in says ..." wow the baby is so beautiful" the young lady holding the doors says "thanks , yah we were just discussing how cute she truly is" my eyes filled up... i know this will follow her forever, will she always like the comments even if they are positive, i don't know. I do know it

will be something she will have to go thru the rest of her life and if she is blessed to be able to have kids ( that is such a sore spot with me ..i cry everytime i think out her not being able too) will they go through it too??? yes i am sure they will... Hope all is well bethgordon03 <bethgordon03@...> wrote: Hello allThis is such a sensitive and personal issue to us all, because even though we or a loved one have BPES, we are all different people with different experiences who understand ourselves and the world in different ways. If it helps to think of BPES as a gift, then go ahead. If you feel justified in calling it a disability, then that's okay, too. I don't see it as a gift, certainly in my daughter's young life it has been an obstacle, but that doesn't mean it will

always be. As a person with BPES, I wish people just didn't notice it or feel they had to categorize me in some way. My neighbor said to me, what's the big deal, why do you worry about your daughter so much, once you explain it people accept it. And I said, exactly, you walk out your front door, and you are certain the world accepts you, why do I have to explain my existence (or my daughter's) to you or anyone to gain what most people already have. She really couldn't have found a better way to explain it. It is different to me now that I have a daughter, it forces me to see the ways BPES has shaped my personality and it forces me to see that if people are staring at her, well they are staring at me, too. It's less noticeable on an adult than a little child. I think as a kid I just tuned people out, sometimes people imply that they think Lily is mentally challenged, amazingly it doesn't upset me. Once as a

young woman a silly man said to me, wow I didn't know people with down's syndrome could be smart, I thought they were all retarded. It shocked me at first but the silliness made me laugh so hard. I said wow I am a really unique specimen. I don't mind having BPES, I only wish it wasn't "autosomal dominant" I wish I wouldn't keep passing it on, now facing such a hard choice of whether or not to have more children. Beth> > It's been a long time that I've visited this group and recently I> >have been catching up on the postings. I just love this group and> >love how supportive all the members can be. Both my daughter and I> >have BPES, along with my father and 2 older sisters. We wish that> >this group existed during our time! I do feel fortunate that it> >exists for my daughter.> >> >Some of the postings I've read so far is

a bit disturbing. There> >are couple of postings where BPES is described to be> >a "disability". Another posting wrote if it is related to Asians or> >even to orphans. Other postings go as far if BPES is related to the> >child's weight!> >> >I would like to say from experience, that BPES does not> >discriminate. It is not an Asian, nor an orphan thing. It is not a> >disability. It is not a cause for low weights in children.> >Children with BPES are normal children. My daughter and your> >daugthers and sons are normal kids. And BPES is really nothing. If> >we emphasize too much on the negative, then we are teaching our> >children the wrong thing.> >> >What BPES is a genetic anomaly. BPES means small eyes. BPES means> >droopy eyelids. And BPES does not

mean our kids will live unhappy,> >unhealthy lives. I grew up happily with my small eyes and so will> >my daughter. BPES is cosmetic.> >> >I love how there are photos that show different races across the> >world. From US, Singapore, to Europe, to Australia. These photos> >and families are our tools to teach our children with bleph that> >they are not alone and that they WILL be ok. Perhaps what was once> >a "rare" disorder is no longer true. The growth of this group shows> >how we are not alone.> >> >So please believe in the positive of BPES and show your kids the> >beauty they possess in those little eyes!> >> >Merry Christmas to everyone in this group!> >> >> >> >> >> >> >

December 31, 2005

Beth, I always enjoy reading your posts...tears here. I totally understand where you are coming from about explaining yourself, i dislike that part very much...but i have a funny story that just happened today ... i was in the bathroom at the mall changing ...a young lady, maybe 20 was washing her hands and turned to me and said " I just love your daughters eyes, she is truly unique, she looks a little Asian" to that I chuckled and said to get this look she has had 2 surgeries ...and we began to talk and i shortly explained it to her ...as we were walking out she was holding the door for me and adriana and another woman coming in says ..." wow the baby is so beautiful" the young lady holding the doors says "thanks , yah we were just discussing how cute she truly is" my eyes filled up... i know this will follow her forever, will she always like the comments even if they are positive, i don't know. I do know it

will be something she will have to go thru the rest of her life and if she is blessed to be able to have kids ( that is such a sore spot with me ..i cry everytime i think out her not being able too) will they go through it too??? yes i am sure they will... Hope all is well Happy New bethgordon03 <bethgordon03@...> wrote: Hello allThis is such a sensitive and personal issue to us all, because even though we or a loved one have BPES, we are all different people with different experiences who understand ourselves and the world in different ways. If it helps to think of BPES as a gift, then go ahead. If you feel justified in calling it a disability, then that's okay, too. I don't see it as a gift, certainly in my daughter's young life it has been an obstacle, but that doesn't mean

it will always be. As a person with BPES, I wish people just didn't notice it or feel they had to categorize me in some way. My neighbor said to me, what's the big deal, why do you worry about your daughter so much, once you explain it people accept it. And I said, exactly, you walk out your front door, and you are certain the world accepts you, why do I have to explain my existence (or my daughter's) to you or anyone to gain what most people already have. She really couldn't have found a better way to explain it. It is different to me now that I have a daughter, it forces me to see the ways BPES has shaped my personality and it forces me to see that if people are staring at her, well they are staring at me, too. It's less noticeable on an adult than a little child. I think as a kid I just tuned people out, sometimes people imply that they think Lily is mentally challenged, amazingly it doesn't upset me.

Once as a young woman a silly man said to me, wow I didn't know people with down's syndrome could be smart, I thought they were all retarded. It shocked me at first but the silliness made me laugh so hard. I said wow I am a really unique specimen. I don't mind having BPES, I only wish it wasn't "autosomal dominant" I wish I wouldn't keep passing it on, now facing such a hard choice of whether or not to have more children. Beth> > It's been a long time that I've visited this group and recently I> >have been catching up on the postings. I just love this group and> >love how supportive all the members can be. Both my daughter and I> >have BPES, along with my father and 2 older sisters. We wish that> >this group existed during our time! I do feel fortunate that it> >exists for my daughter.> >> >Some of the postings

I've read so far is a bit disturbing. There> >are couple of postings where BPES is described to be> >a "disability". Another posting wrote if it is related to Asians or> >even to orphans. Other postings go as far if BPES is related to the> >child's weight!> >> >I would like to say from experience, that BPES does not> >discriminate. It is not an Asian, nor an orphan thing. It is not a> >disability. It is not a cause for low weights in children.> >Children with BPES are normal children. My daughter and your> >daugthers and sons are normal kids. And BPES is really nothing. If> >we emphasize too much on the negative, then we are teaching our> >children the wrong thing.> >> >What BPES is a genetic anomaly. BPES means small eyes. BPES means> >droopy

eyelids. And BPES does not mean our kids will live unhappy,> >unhealthy lives. I grew up happily with my small eyes and so will> >my daughter. BPES is cosmetic.> >> >I love how there are photos that show different races across the> >world. From US, Singapore, to Europe, to Australia. These photos> >and families are our tools to teach our children with bleph that> >they are not alone and that they WILL be ok. Perhaps what was once> >a "rare" disorder is no longer true. The growth of this group shows> >how we are not alone.> >> >So please believe in the positive of BPES and show your kids the> >beauty they possess in those little eyes!> >> >Merry Christmas to everyone in this group!> >> >> >> >> >> >> >

December 31, 2005

Beth, I always enjoy reading your posts...tears here. I totally understand where you are coming from about explaining yourself, i dislike that part very much...but i have a funny story that just happened today ... i was in the bathroom at the mall changing ...a young lady, maybe 20 was washing her hands and turned to me and said " I just love your daughters eyes, she is truly unique, she looks a little Asian" to that I chuckled and said to get this look she has had 2 surgeries ...and we began to talk and i shortly explained it to her ...as we were walking out she was holding the door for me and adriana and another woman coming in says ..." wow the baby is so beautiful" the young lady holding the doors says "thanks , yah we were just discussing how cute she truly is" my eyes filled up... i know this will follow her forever, will she always like the comments even if they are positive, i don't know. I do know it

will be something she will have to go thru the rest of her life and if she is blessed to be able to have kids ( that is such a sore spot with me ..i cry everytime i think out her not being able too) will they go through it too??? yes i am sure they will... Hope all is bethgordon03 <bethgordon03@...> wrote: Hello allThis is such a sensitive and personal issue to us all, because even though we or a loved one have BPES, we are all different people with different experiences who understand ourselves and the world in different ways. If it helps to think of BPES as a gift, then go ahead. If you feel justified in calling it a disability, then that's okay, too. I don't see it as a gift, certainly in my daughter's young life it has been an obstacle, but that doesn't mean it will

always be. As a person with BPES, I wish people just didn't notice it or feel they had to categorize me in some way. My neighbor said to me, what's the big deal, why do you worry about your daughter so much, once you explain it people accept it. And I said, exactly, you walk out your front door, and you are certain the world accepts you, why do I have to explain my existence (or my daughter's) to you or anyone to gain what most people already have. She really couldn't have found a better way to explain it. It is different to me now that I have a daughter, it forces me to see the ways BPES has shaped my personality and it forces me to see that if people are staring at her, well they are staring at me, too. It's less noticeable on an adult than a little child. I think as a kid I just tuned people out, sometimes people imply that they think Lily is mentally challenged, amazingly it doesn't upset me. Once as a

young woman a silly man said to me, wow I didn't know people with down's syndrome could be smart, I thought they were all retarded. It shocked me at first but the silliness made me laugh so hard. I said wow I am a really unique specimen. I don't mind having BPES, I only wish it wasn't "autosomal dominant" I wish I wouldn't keep passing it on, now facing such a hard choice of whether or not to have more children. Beth> > It's been a long time that I've visited this group and recently I> >have been catching up on the postings. I just love this group and> >love how supportive all the members can be. Both my daughter and I> >have BPES, along with my father and 2 older sisters. We wish that> >this group existed during our time! I do feel fortunate that it> >exists for my daughter.> >> >Some of the postings I've read so far is

a bit disturbing. There> >are couple of postings where BPES is described to be> >a "disability". Another posting wrote if it is related to Asians or> >even to orphans. Other postings go as far if BPES is related to the> >child's weight!> >> >I would like to say from experience, that BPES does not> >discriminate. It is not an Asian, nor an orphan thing. It is not a> >disability. It is not a cause for low weights in children.> >Children with BPES are normal children. My daughter and your> >daugthers and sons are normal kids. And BPES is really nothing. If> >we emphasize too much on the negative, then we are teaching our> >children the wrong thing.> >> >What BPES is a genetic anomaly. BPES means small eyes. BPES means> >droopy eyelids. And BPES does not

mean our kids will live unhappy,> >unhealthy lives. I grew up happily with my small eyes and so will> >my daughter. BPES is cosmetic.> >> >I love how there are photos that show different races across the> >world. From US, Singapore, to Europe, to Australia. These photos> >and families are our tools to teach our children with bleph that> >they are not alone and that they WILL be ok. Perhaps what was once> >a "rare" disorder is no longer true. The growth of this group shows> >how we are not alone.> >> >So please believe in the positive of BPES and show your kids the> >beauty they possess in those little eyes!> >> >Merry Christmas to everyone in this group!> >> >> >> >> >> >> >

December 31, 2005

Beth, I always enjoy reading your posts...tears here. I totally understand where you are coming from about explaining yourself, i dislike that part very much...but i have a funny story that just happened today ... i was in the bathroom at the mall changing ...a young lady, maybe 20 was washing her hands and turned to me and said " I just love your daughters eyes, she is truly unique, she looks a little Asian" to that I chuckled and said to get this look she has had 2 surgeries ...and we began to talk and i shortly explained it to her ...as we were walking out she was holding the door for me and adriana and another woman coming in says ..." wow the baby is so beautiful" the young lady holding the doors says "thanks , yah we were just discussing how cute she truly is" my eyes filled up... i know this will follow her forever, will she always like the comments even if they are positive, i don't know. I do know it

will be something she will have to go thru the rest of her life and if she is blessed to be able to have kids ( that is such a sore spot with me ..i cry everytime i think out her not being able too) will they go through it too??? yes i am sure they will... Hope all is well Happy New YEar to bethgordon03 <bethgordon03@...> wrote: Hello allThis is such a sensitive and personal issue to us all, because even though we or a loved one have BPES, we are all different people with different experiences who understand ourselves and the world in different ways. If it helps to think of BPES as a gift, then go ahead. If you feel justified in calling it a disability, then that's okay, too. I don't see it as a gift, certainly in my daughter's young life it has been an obstacle, but that

doesn't mean it will always be. As a person with BPES, I wish people just didn't notice it or feel they had to categorize me in some way. My neighbor said to me, what's the big deal, why do you worry about your daughter so much, once you explain it people accept it. And I said, exactly, you walk out your front door, and you are certain the world accepts you, why do I have to explain my existence (or my daughter's) to you or anyone to gain what most people already have. She really couldn't have found a better way to explain it. It is different to me now that I have a daughter, it forces me to see the ways BPES has shaped my personality and it forces me to see that if people are staring at her, well they are staring at me, too. It's less noticeable on an adult than a little child. I think as a kid I just tuned people out, sometimes people imply that they think Lily is mentally challenged, amazingly it doesn't

upset me. Once as a young woman a silly man said to me, wow I didn't know people with down's syndrome could be smart, I thought they were all retarded. It shocked me at first but the silliness made me laugh so hard. I said wow I am a really unique specimen. I don't mind having BPES, I only wish it wasn't "autosomal dominant" I wish I wouldn't keep passing it on, now facing such a hard choice of whether or not to have more children. Beth> > It's been a long time that I've visited this group and recently I> >have been catching up on the postings. I just love this group and> >love how supportive all the members can be. Both my daughter and I> >have BPES, along with my father and 2 older sisters. We wish that> >this group existed during our time! I do feel fortunate that it> >exists for my daughter.> >> >Some of the

postings I've read so far is a bit disturbing. There> >are couple of postings where BPES is described to be> >a "disability". Another posting wrote if it is related to Asians or> >even to orphans. Other postings go as far if BPES is related to the> >child's weight!> >> >I would like to say from experience, that BPES does not> >discriminate. It is not an Asian, nor an orphan thing. It is not a> >disability. It is not a cause for low weights in children.> >Children with BPES are normal children. My daughter and your> >daugthers and sons are normal kids. And BPES is really nothing. If> >we emphasize too much on the negative, then we are teaching our> >children the wrong thing.> >> >What BPES is a genetic anomaly. BPES means small eyes. BPES means> >droopy

eyelids. And BPES does not mean our kids will live unhappy,> >unhealthy lives. I grew up happily with my small eyes and so will> >my daughter. BPES is cosmetic.> >> >I love how there are photos that show different races across the> >world. From US, Singapore, to Europe, to Australia. These photos> >and families are our tools to teach our children with bleph that> >they are not alone and that they WILL be ok. Perhaps what was once> >a "rare" disorder is no longer true. The growth of this group shows> >how we are not alone.> >> >So please believe in the positive of BPES and show your kids the> >beauty they possess in those little eyes!> >> >Merry Christmas to everyone in this group!> >> >> >> >> >> >> >

December 31, 2005

Beth, I always enjoy reading your posts...tears here. I totally understand where you are coming from about explaining yourself, i dislike that part very much...but i have a funny story that just happened today ... i was in the bathroom at the mall changing ...a young lady, maybe 20 was washing her hands and turned to me and said " I just love your daughters eyes, she is truly unique, she looks a little Asian" to that I chuckled and said to get this look she has had 2 surgeries ...and we began to talk and i shortly explained it to her ...as we were walking out she was holding the door for me and adriana and another woman coming in says ..." wow the baby is so beautiful" the young lady holding the doors says "thanks , yah we were just discussing how cute she truly is" my eyes filled up... i know this will follow her forever, will she always like the comments even if they are positive, i

don't know. I do know it will be something she will have to go thru the rest of her life and if she is blessed to be able to have kids ( that is such a sore spot with me ..i cry everytime i think out her not being able too) will they go through it too??? yes i am sure they will... Hope all is well Happy New Year to All.....bethgordon03 <bethgordon03@...> wrote: Hello allThis is such a sensitive and personal issue to us all, because even though we or a loved one have BPES, we are all different people with different experiences who understand ourselves and the world in different ways. If it helps to think of BPES as a gift, then go ahead. If you feel justified in calling it a disability, then that's okay, too. I don't see it as a gift, certainly in my daughter's young life it has

been an obstacle, but that doesn't mean it will always be. As a person with BPES, I wish people just didn't notice it or feel they had to categorize me in some way. My neighbor said to me, what's the big deal, why do you worry about your daughter so much, once you explain it people accept it. And I said, exactly, you walk out your front door, and you are certain the world accepts you, why do I have to explain my existence (or my daughter's) to you or anyone to gain what most people already have. She really couldn't have found a better way to explain it. It is different to me now that I have a daughter, it forces me to see the ways BPES has shaped my personality and it forces me to see that if people are staring at her, well they are staring at me, too. It's less noticeable on an adult than a little child. I think as a kid I just tuned people out, sometimes people imply that they think Lily is mentally

challenged, amazingly it doesn't upset me. Once as a young woman a silly man said to me, wow I didn't know people with down's syndrome could be smart, I thought they were all retarded. It shocked me at first but the silliness made me laugh so hard. I said wow I am a really unique specimen. I don't mind having BPES, I only wish it wasn't "autosomal dominant" I wish I wouldn't keep passing it on, now facing such a hard choice of whether or not to have more children. Beth> > It's been a long time that I've visited this group and recently I> >have been catching up on the postings. I just love this group and> >love how supportive all the members can be. Both my daughter and I> >have BPES, along with my father and 2 older sisters. We wish that> >this group existed during our time! I do feel fortunate that it> >exists for my daughter.>

>> >Some of the postings I've read so far is a bit disturbing. There> >are couple of postings where BPES is described to be> >a "disability". Another posting wrote if it is related to Asians or> >even to orphans. Other postings go as far if BPES is related to the> >child's weight!> >> >I would like to say from experience, that BPES does not> >discriminate. It is not an Asian, nor an orphan thing. It is not a> >disability. It is not a cause for low weights in children.> >Children with BPES are normal children. My daughter and your> >daugthers and sons are normal kids. And BPES is really nothing. If> >we emphasize too much on the negative, then we are teaching our> >children the wrong thing.> >> >What BPES is a genetic anomaly. BPES means small eyes. BPES

means> >droopy eyelids. And BPES does not mean our kids will live unhappy,> >unhealthy lives. I grew up happily with my small eyes and so will> >my daughter. BPES is cosmetic.> >> >I love how there are photos that show different races across the> >world. From US, Singapore, to Europe, to Australia. These photos> >and families are our tools to teach our children with bleph that> >they are not alone and that they WILL be ok. Perhaps what was once> >a "rare" disorder is no longer true. The growth of this group shows> >how we are not alone.> >> >So please believe in the positive of BPES and show your kids the> >beauty they possess in those little eyes!> >> >Merry Christmas to everyone in this group!> >> >> >> >> >>

>> >

December 31, 2005

Thank you Sharon, I feel just like you do, have the same experiences

and thoughts. You are a great mom, I wish you lived nearby so I

could see you. Lily loves to play with babies, even though she is

still one, herself.

take care and Happy New Year

> > > It's been a long time that I've visited this group and

> recently I

> > >have been catching up on the postings. I just love this group

and

> > >love how supportive all the members can be. Both my daughter

and

> I

> > >have BPES, along with my father and 2 older sisters. We wish

that

> > >this group existed during our time! I do feel fortunate that it

> > >exists for my daughter.

> > >

> > >Some of the postings I've read so far is a bit disturbing.

There

> > >are couple of postings where BPES is described to be

> > >a " disability " . Another posting wrote if it is related to

Asians

> or

> > >even to orphans. Other postings go as far if BPES is related to

> the

> > >child's weight!

> > >

> > >I would like to say from experience, that BPES does not

> > >discriminate. It is not an Asian, nor an orphan thing. It is

> not a

> > >disability. It is not a cause for low weights in children.

> > >Children with BPES are normal children. My daughter and your

> > >daugthers and sons are normal kids. And BPES is really

nothing.

> If

> > >we emphasize too much on the negative, then we are teaching our

> > >children the wrong thing.

> > >

> > >What BPES is a genetic anomaly. BPES means small eyes. BPES

> means

> > >droopy eyelids. And BPES does not mean our kids will live

> unhappy,

> > >unhealthy lives. I grew up happily with my small eyes and so

will

> > >my daughter. BPES is cosmetic.

> > >

> > >I love how there are photos that show different races across the

> > >world. From US, Singapore, to Europe, to Australia. These

photos

> > >and families are our tools to teach our children with bleph that

> > >they are not alone and that they WILL be ok. Perhaps what was

> once

> > >a " rare " disorder is no longer true. The growth of this group

> shows

> > >how we are not alone.

> > >

> > >So please believe in the positive of BPES and show your kids the

> > >beauty they possess in those little eyes!

> > >

> > >Merry Christmas to everyone in this group!

> > >

December 31, 2005

Thanks Beth, i too know you are a great mom and wonderful peraon..mYBW ONE Day soon we can all mett ..that would be great! Have a Happy New year..baby on my lap hard to type.bethgordon03 <bethgordon03@...> wrote: Thank you Sharon, I feel just like you do, have the same experiences and thoughts. You are a great mom, I wish you lived nearby so I could see you. Lily loves to play with babies, even though she is still one, herself. take care and Happy New Year> > > It's been a long time that I've visited this group and > recently I> > >have been catching up on

the postings. I just love this group and> > >love how supportive all the members can be. Both my daughter and > I> > >have BPES, along with my father and 2 older sisters. We wish that> > >this group existed during our time! I do feel fortunate that it> > >exists for my daughter.> > >> > >Some of the postings I've read so far is a bit disturbing. There> > >are couple of postings where BPES is described to be> > >a "disability". Another posting wrote if it is related to Asians > or> > >even to orphans. Other postings go as far if BPES is related to > the> > >child's weight!> > >> > >I would like to say from experience, that BPES does not> > >discriminate. It is not an Asian, nor an orphan thing. It is > not a> >

>disability. It is not a cause for low weights in children.> > >Children with BPES are normal children. My daughter and your> > >daugthers and sons are normal kids. And BPES is really nothing. > If> > >we emphasize too much on the negative, then we are teaching our> > >children the wrong thing.> > >> > >What BPES is a genetic anomaly. BPES means small eyes. BPES > means> > >droopy eyelids. And BPES does not mean our kids will live > unhappy,> > >unhealthy lives. I grew up happily with my small eyes and so will> > >my daughter. BPES is cosmetic.> > >> > >I love how there are photos that show different races across the> > >world. From US, Singapore, to Europe, to Australia. These photos> > >and families are our tools

to teach our children with bleph that> > >they are not alone and that they WILL be ok. Perhaps what was > once> > >a "rare" disorder is no longer true. The growth of this group > shows> > >how we are not alone.> > >> > >So please believe in the positive of BPES and show your kids the> > >beauty they possess in those little eyes!> > >> > >Merry Christmas to everyone in this group!> > >> > >> > >> > >> > >> > >> > >

January 4, 2006

> It's been a long time that I've visited this group and recently I

> have been catching up on the postings. I just love this group and

> love how supportive all the members can be. Both my daughter and I

> have BPES, along with my father and 2 older sisters. We wish that

> this group existed during our time! I do feel fortunate that it

> exists for my daughter.

>

> Some of the postings I've read so far is a bit disturbing. There

> are couple of postings where BPES is described to be

> a " disability " . Another posting wrote if it is related to Asians

or

> even to orphans. Other postings go as far if BPES is related to the

> child's weight!

>

> I would like to say from experience, that BPES does not

> discriminate. It is not an Asian, nor an orphan thing. It is not

a

> disability. It is not a cause for low weights in children.

> Children with BPES are normal children. My daughter and your

> daugthers and sons are normal kids. And BPES is really nothing.

If

> we emphasize too much on the negative, then we are teaching our

> children the wrong thing.

>

> What BPES is a genetic anomaly. BPES means small eyes. BPES means

> droopy eyelids. And BPES does not mean our kids will live unhappy,

> unhealthy lives. I grew up happily with my small eyes and so will

> my daughter. BPES is cosmetic.

>

> I love how there are photos that show different races across the

> world. From US, Singapore, to Europe, to Australia. These photos

> and families are our tools to teach our children with bleph that

> they are not alone and that they WILL be ok. Perhaps what was once

> a " rare " disorder is no longer true. The growth of this group

shows

> how we are not alone.

>

> So please believe in the positive of BPES and show your kids the

> beauty they possess in those little eyes!

>

> Merry Christmas to everyone in this group!

>

January 6, 2006

BPES is not only cosmetic, it also impairs vision, so many children need

surgical interventions to avoid blindness. In women BPES may cause

infertility. And in some people both infertility and facial features may

cause psychological disturbances. BPES may alter the health state of some

people. In the other hand BPES is more frequent in Asian people. This is not

discriminatory is a statistical fact.

Of course that nobody with BPES should be discriminated. Our children, every

human being to tell the truth, are equal and we must teach them that they

are not different to other people. Of course they can be happy, but is also

true that sometimes, many times, other children and also adults look at them

with strange faces, or make jokes about their eyes, and that they need out

support more than other children. My 6-years old daughter with BPES is

extremely beautiful to me. I will try hard her to be happy, but I know that

sometimes it is and will be difficult.

Happy New Year

>From: " a " <ekittycat12000@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis Re: BPES does not discriminate....

>Date: Wed, 04 Jan 2006 00:48:06 -0000

>

> > It's been a long time that I've visited this group and recently I

> > have been catching up on the postings. I just love this group and

> > love how supportive all the members can be. Both my daughter and I

> > have BPES, along with my father and 2 older sisters. We wish that

> > this group existed during our time! I do feel fortunate that it

> > exists for my daughter.

> >

> > Some of the postings I've read so far is a bit disturbing. There

> > are couple of postings where BPES is described to be

> > a " disability " . Another posting wrote if it is related to Asians

>or

> > even to orphans. Other postings go as far if BPES is related to the

> > child's weight!

> >

> > I would like to say from experience, that BPES does not

> > discriminate. It is not an Asian, nor an orphan thing. It is not

>a

> > disability. It is not a cause for low weights in children.

> > Children with BPES are normal children. My daughter and your

> > daugthers and sons are normal kids. And BPES is really nothing.

>If

> > we emphasize too much on the negative, then we are teaching our

> > children the wrong thing.

> >

> > What BPES is a genetic anomaly. BPES means small eyes. BPES means

> > droopy eyelids. And BPES does not mean our kids will live unhappy,

> > unhealthy lives. I grew up happily with my small eyes and so will

> > my daughter. BPES is cosmetic.

> >

> > I love how there are photos that show different races across the

> > world. From US, Singapore, to Europe, to Australia. These photos

> > and families are our tools to teach our children with bleph that

> > they are not alone and that they WILL be ok. Perhaps what was once

> > a " rare " disorder is no longer true. The growth of this group

>shows

> > how we are not alone.

> >

> > So please believe in the positive of BPES and show your kids the

> > beauty they possess in those little eyes!

> >

> > Merry Christmas to everyone in this group!

> >

January 6, 2006

> > > It's been a long time that I've visited this group and

recently I

> > > have been catching up on the postings. I just love this group

and

> > > love how supportive all the members can be. Both my daughter

and I

> > > have BPES, along with my father and 2 older sisters. We wish

that

> > > this group existed during our time! I do feel fortunate that it

> > > exists for my daughter.

> > >

> > > Some of the postings I've read so far is a bit disturbing.

There

> > > are couple of postings where BPES is described to be

> > > a " disability " . Another posting wrote if it is related to

Asians

> >or

> > > even to orphans. Other postings go as far if BPES is related to

the

> > > child's weight!

> > >

> > > I would like to say from experience, that BPES does not

> > > discriminate. It is not an Asian, nor an orphan thing. It is

not

> >a

> > > disability. It is not a cause for low weights in children.

> > > Children with BPES are normal children. My daughter and your

> > > daugthers and sons are normal kids. And BPES is really nothing.

> >If

> > > we emphasize too much on the negative, then we are teaching our

> > > children the wrong thing.

> > >

> > > What BPES is a genetic anomaly. BPES means small eyes. BPES

means

> > > droopy eyelids. And BPES does not mean our kids will live

unhappy,

> > > unhealthy lives. I grew up happily with my small eyes and so

will

> > > my daughter. BPES is cosmetic.

> > >

> > > I love how there are photos that show different races across the

> > > world. From US, Singapore, to Europe, to Australia. These

photos

> > > and families are our tools to teach our children with bleph that

> > > they are not alone and that they WILL be ok. Perhaps what was

once

> > > a " rare " disorder is no longer true. The growth of this group

> >shows

> > > how we are not alone.

> > >

> > > So please believe in the positive of BPES and show your kids the

> > > beauty they possess in those little eyes!

> > >

> > > Merry Christmas to everyone in this group!

> > >

January 6, 2006

Hi ,

I would also like to read this statistical report stating that BPES

is more common among Asians. I'm Korean and I believe that I am not

a statistic number.

You've brought up true facts in that in some women, BPES can cause

infertility. However, I must disagree with you in stating that BPES

causes psychological distrubances. How so?

Are you saying that the members of this group have pyshological

disturbances? Are you implying that we all have altered health

states due to our small eyes?

I find that you are sending negative messages and discouraging

members who have worked hard to remain strong and positive for their

children and for themselves. We are all going through the same

emotional roller coaster rides due to BPES in our lives but that

does not mean, nor will it ever mean, we are all psychological

disturbed.

We all have choices in life. How we choose to manage our emotions

are up to us.

People will stare. Children will get teased. It is up to us how we

choose to manage them, without any psychological disturbances.

> > > It's been a long time that I've visited this group and

recently I

> > > have been catching up on the postings. I just love this group

and

> > > love how supportive all the members can be. Both my daughter

and I

> > > have BPES, along with my father and 2 older sisters. We wish

that

> > > this group existed during our time! I do feel fortunate that

it

> > > exists for my daughter.

> > >

> > > Some of the postings I've read so far is a bit disturbing.

There

> > > are couple of postings where BPES is described to be

> > > a " disability " . Another posting wrote if it is related to

Asians

> >or

> > > even to orphans. Other postings go as far if BPES is related

to the

> > > child's weight!

> > >

> > > I would like to say from experience, that BPES does not

> > > discriminate. It is not an Asian, nor an orphan thing. It is

not

> >a

> > > disability. It is not a cause for low weights in children.

> > > Children with BPES are normal children. My daughter and your

> > > daugthers and sons are normal kids. And BPES is really

nothing.

> >If

> > > we emphasize too much on the negative, then we are teaching our

> > > children the wrong thing.

> > >

> > > What BPES is a genetic anomaly. BPES means small eyes. BPES

means

> > > droopy eyelids. And BPES does not mean our kids will live

unhappy,

> > > unhealthy lives. I grew up happily with my small eyes and so

will

> > > my daughter. BPES is cosmetic.

> > >

> > > I love how there are photos that show different races across

the

> > > world. From US, Singapore, to Europe, to Australia. These

photos

> > > and families are our tools to teach our children with bleph

that

> > > they are not alone and that they WILL be ok. Perhaps what was

once

> > > a " rare " disorder is no longer true. The growth of this group

> >shows

> > > how we are not alone.

> > >

> > > So please believe in the positive of BPES and show your kids

the

> > > beauty they possess in those little eyes!

> > >

> > > Merry Christmas to everyone in this group!

> > >

January 11, 2006

,

I'm not going to go into a battle of words with you. You are free

to express your feelings and thougths like the rest of us. What

bothers me is your attitude and your connection of psychological

disturbances to BPES.

Don't you think we ALL have read and researched alot about BPES?

Don't you think we ALL have spoken to several doctors about BPES?

Never, have I heard of any doctor advising me of psychological

disturbances in the adolesence years due to BPES. Never in my life,

living with BPES, have doctors, nor Jasmine's doctors advised of

psychological disturbances in the adolesence years due to BPES.

Personally, I found this insane, idiotic and just plain stupid.

Adolesence is no where near BPES. This is comparing apples to

oranges. Who in this group experienced perfect adolesence years?

Adolesence will be hard no matter if the child has BPES or not.

It's hard because it is what it is. Children in this stage are

going through many identity definitions. I did not have a good

experience during my adolesence stage but never would I blame it on

my BPES. It is what it is...adolesence. And to be warned of it due

to BPES...well, all I have to say is that I feel sorry for you for

having non supportive doctors advising you.

It's true that one type of BPES does affect the woman's reproductive

system, but some of these women have accepted this fact and moved

onto welcoming the idea of adoption. And for those women who are

carrying the type of BPES that affects their reproductive system, do

you think they want to read or be told they have psychological

disturbances. It's like calling a mentally handicapped

person, " You're crazy! " to his face. A little discretion, please.

You say you are positive, fine, I guess I can believe you.

However, you also have to face the real facts about adolesence.

Would you be concerned of your daughter's adolesence if she didnt'

have BPES?

The facts are your daughter and my daughter will have a tough

adolesence years because that's what life is. Your daughter will

get teased in school because that's what children do. My niece and

nephews who have huge eyes often get teased. So are they

psychological disturbed? What's the reason for them to get teased?

Will they have tough adolesence years? Yes, because that's life;

that's reality. It's part of growing up. Why do you think there are

several books on adolesence? Or support groups for managing children

through the adolesence years? Same reasons why this group exists;

To educate, to support and to comfort each other.

You want to prepare your daughter for these years and protect her

from the harm of adolesence? Well, you can do it by not believing

she will be pshychological disturbed. And finding yourself a new,

more supportive doctor won't hurt either.

, your daughter and my daughter and the rest of this group's

daughers and sons WILL BE OK. I believe that our kids will have

normal lives. They are no different from big eyed kids. Your

daughter will be fine. The last thing you want to do is bring upon

your fear of psychological disturbances onto your daughter. Count

your blessings that BPES is the only thing she has (I'm assuming

this). And don't get too overwhelmed with the " facts of BPES " and

the psychological disturbances. Spend this energy in teaching your

daughter to smile at strangers who are staring and to talk about

BPES openly. Go to her school and teach her class what you have

read, minus what the doctors have been telling you. This little tip

was given to me from an experienced mom who both her and her

daughter has BPES and they are living happily ever after. Her child

is the happiest kid on the block. Do you think this child's BPES

is affecting her quality of life? No, and that's because her mom

didn't allow it.

So, I look forward to your response with the pediatrics book you

have where it states BPES is more common among Asians. Perhaps, a

little less reading and more nurturing of yourself and of your

daughter may do you both some good!

Min

> > > > > It's been a long time that I've visited this group and

> >recently I

> > > > > have been catching up on the postings. I just love this

group

> >and

> > > > > love how supportive all the members can be. Both my

daughter

> >and I

> > > > > have BPES, along with my father and 2 older sisters. We

wish

> >that

> > > > > this group existed during our time! I do feel fortunate

that

> >it

> > > > > exists for my daughter.

> > > > >

> > > > > Some of the postings I've read so far is a bit disturbing.

> >There

> > > > > are couple of postings where BPES is described to be

> > > > > a " disability " . Another posting wrote if it is related to

> >Asians

> > > >or

> > > > > even to orphans. Other postings go as far if BPES is

> > > > > child's weight!

> > > > >

> > > > > I would like to say from experience, that BPES does not

> > > > > discriminate. It is not an Asian, nor an orphan thing.

It is

> >not

> > > >a

> > > > > disability. It is not a cause for low weights in children.

> > > > > Children with BPES are normal children. My daughter and

your

> > > > > daugthers and sons are normal kids. And BPES is really

> >nothing.

> > > >If

> > > > > we emphasize too much on the negative, then we are

teaching our

> > > > > children the wrong thing.

> > > > >

> > > > > What BPES is a genetic anomaly. BPES means small eyes.

BPES

> >means

> > > > > droopy eyelids. And BPES does not mean our kids will live

> >unhappy,

> > > > > unhealthy lives. I grew up happily with my small eyes and

so

> >will

> > > > > my daughter. BPES is cosmetic.

> > > > >

> > > > > I love how there are photos that show different races

across

> >the

> > > > > world. From US, Singapore, to Europe, to Australia. These

> >photos

> > > > > and families are our tools to teach our children with bleph

> >that

> > > > > they are not alone and that they WILL be ok. Perhaps what

was

> >once

> > > > > a " rare " disorder is no longer true. The growth of this

group

> > > >shows

> > > > > how we are not alone.

> > > > >

> > > > > So please believe in the positive of BPES and show your

kids

> >the

> > > > > beauty they possess in those little eyes!

> > > > >

> > > > > Merry Christmas to everyone in this group!

> > > > >

January 11, 2006

,

Whether you intended to or not, if you wanted to be seen as a " troll " ,

you've gone the right way about it.

For the less Internet-savvy folks in the group, a " troll " is defined as

follows:

" In Internet terminology, a troll is a person who posts inflammatory

messages on the Internet, such as on online discussion forums, to

disrupt discussion or to upset its participants. " Troll " can also mean

the inflammatory message itself posted by a troll or be a verb meaning

to post such messages. " Trolling " is also commonly used to describe the

activity. "

(http://en.wikipedia.org/wiki/Internet_troll)

Trolling is explicitly forbidden on this group.

(blepharophimosis/ - in red text)

Note that I am quoting my sources. Had you done so, much of the outrage

you have stirred might have been avoided. I urge you to either quote

your factual sources sooner rather than later, or make it clear from the

outset that you are expressing a feeling/opinion rather than

facts/research. Or risk being seen as a troll, and then cop a thorough

flaming.

Regards,

Rob W

luis ortega wrote:

> Hi,

> I am afraid that you have misunderstood me. You of course can disagree with

> me, perhaps you have not any psychological disturbance. I hope that my

> daughter won’t have either. But some people may have it. I have read a lot

> about BPES and I have talked with many physicians about BPES. All of them

> have recommended me to be careful with my daughter because the psychological

> impact than BPES may have on her during adolescence. I know that there are a

> lot of girls and women in the group. I am sure, that specially for them, not

> only cosmetics but some aspects of their reproductive life (POF, menstrual

> alterations) may cause psychological stress and be, sometimes, very hard for

> them. World Health Organisation about the state of health states that health

> is not only physical, it is also psychological. For instance if a little boy

> or girl is suffering because he or she is being teased or if a woman is

> suffering because she can not get pregnant, they are in psychological

> distress and they are not in a state of health. That don’t make us worse;

> that make us human.

>

> If you find that I am sending negative messages you are wrong.

No, you are sending messages that are being interpreted negatively,

whether you meant to or not. The finders of those messages are not wrong.

> I am writing, as other members of the group, of my feelings.

No, you are presenting these " feelings " as though they are scientific

facts (and with no substantiation). Feelings are fine, as long as they

are presented and received as such, and not dressed up as

(unsubstantiated) " research " .

> If all the facts about BPES

> were marvellous: if we wouldn’t be worried about surgeries, photophobia,

> infertility, and so on, this group wouldn’t exist, because it would not be

> necessary. We are here to help each other, to comfort each other and to be

> sympathetic with other people that is like us. I like this group a lot, it

> has helped me (and I hope that it will help me and more people in the

> future), I remain positive for my daughter and for myself, that is the

> reason why I prefer to face the real facts about BPES. Of course we can

> choose how to manage our emotions. But emotions are that, and many times

> they are really difficult to manage, specially in some times of life as

> adolescence. To manage them correctly we must know well the storm of

> emotions and psychological hurdles that our sons and daughters must go

> through.

>

> I have read that BPES is more common among Asians in a book of paediatrics.

> I have not the reference now, but I will look for it. Nobody of us is a

> statistic number, but in epidemiological terms all of us are numbers, the

> incidence and prevalence of diseases, malformations and so on are measured

> in this way, and as you know the incidence and prevalence varies in diverse

> ethnic groups. I am sorry if you have felt affronted by my words.

>

January 11, 2006

Well I have BPES and I had a happy adolescence. Any

undiagnosed " psychological disturbances " that I may have, can't be

blamed on BPES. haha

You can do so much more damage to your child's self esteem by

assuming they will have a miserable childhood because of BPES or

anything else.

I think a doctor might ask about a child's well being, especially if

they know they are being teased. But to inquire about how a child's

self esteem is developing, is completely different from saying they

have " psychological disturbances " . I am going to go out on a limb and

say that... I think (I could be wrong ) but I think there are some

things being exaggerated here.

Lots of women face infertility, but that doesn't make them disturbed.

I have yet to meet any adult who has lived a stress-free life, who

never worries about their future, or any parent who doesn't worry

about their child for one reason or another.

> > > > > > It's been a long time that I've visited this group and

> > >recently I

> > > > > > have been catching up on the postings. I just love this

> group

> > >and

> > > > > > love how supportive all the members can be. Both my

> daughter

> > >and I

> > > > > > have BPES, along with my father and 2 older sisters. We

> wish

> > >that

> > > > > > this group existed during our time! I do feel fortunate

> that

> > >it

> > > > > > exists for my daughter.

> > > > > >

> > > > > > Some of the postings I've read so far is a bit disturbing.

> > >There

> > > > > > are couple of postings where BPES is described to be

> > > > > > a " disability " . Another posting wrote if it is related to

> > >Asians

> > > > >or

> > > > > > even to orphans. Other postings go as far if BPES is

> related

> > >to the

> > > > > > child's weight!

> > > > > >

> > > > > > I would like to say from experience, that BPES does not

> > > > > > discriminate. It is not an Asian, nor an orphan thing.

> It is

> > >not

> > > > >a

> > > > > > disability. It is not a cause for low weights in

children.

> > > > > > Children with BPES are normal children. My daughter and

> your

> > > > > > daugthers and sons are normal kids. And BPES is really

> > >nothing.

> > > > >If

> > > > > > we emphasize too much on the negative, then we are

> teaching our

> > > > > > children the wrong thing.

> > > > > >

> > > > > > What BPES is a genetic anomaly. BPES means small eyes.

> BPES

> > >means

> > > > > > droopy eyelids. And BPES does not mean our kids will live

> > >unhappy,

> > > > > > unhealthy lives. I grew up happily with my small eyes

and

> so

> > >will

> > > > > > my daughter. BPES is cosmetic.

> > > > > >

> > > > > > I love how there are photos that show different races

> across

> > >the

> > > > > > world. From US, Singapore, to Europe, to Australia.

These

> > >photos

> > > > > > and families are our tools to teach our children with

bleph

> > >that

> > > > > > they are not alone and that they WILL be ok. Perhaps

what

> was

> > >once

> > > > > > a " rare " disorder is no longer true. The growth of this

> group

> > > > >shows

> > > > > > how we are not alone.

> > > > > >

> > > > > > So please believe in the positive of BPES and show your

> kids

> > >the

> > > > > > beauty they possess in those little eyes!

> > > > > >

> > > > > > Merry Christmas to everyone in this group!

> > > > > >

January 11, 2006

Hi, my name is , i am in this group until september that is the

first time that i write. I am 22 years old and i have BPES. I agree

with , i have psycholical disturbance, i am going a psychologist

every weeks since april. For me, have BPES have been a problem, I

always have felt different because people look me strange every time

I felt discriminate. Sometimes to go out was a problem for this

reason. At first I was surprised that nobody in this group said " I

have psycholical disturbance or something like that " and the same

time I thought " it's wonderful!!!!!!!!!!! " I think the Spanish

people and American or English people are very different because I

lived in London 7 months I didn't feel different anytime, in London

I felt well, I don't find words to explain how are Spanish people it

could be Spanish people are less open-minded than others. It can be

my problem I don't know but it is my experience and my feelings and

I understand .

Now I feel better but I know I can feel much better. I love this

group, I think the people is lovely, the group help me a lot of and

I am really happy for find it. Thank you.

Sorry for my english, it is really bad.

Best wishes, .

-- In blepharophimosis , " luis ortega "

<lortega57@h...> wrote:

>

> Hi,

> I am afraid that you have misunderstood me. You of course can

disagree with

> me, perhaps you have not any psychological disturbance. I hope

that my

> daughter won't have either. But some people may have it. I have

read a lot

> about BPES and I have talked with many physicians about BPES. All

of them

> have recommended me to be careful with my daughter because the

psychological

> impact than BPES may have on her during adolescence. I know that

there are a

> lot of girls and women in the group. I am sure, that specially for

them, not

> only cosmetics but some aspects of their reproductive life (POF,

menstrual

> alterations) may cause psychological stress and be, sometimes,

very hard for

> them. World Health Organisation about the state of health states

that health

> is not only physical, it is also psychological. For instance if a

little boy

> or girl is suffering because he or she is being teased or if a

woman is

> suffering because she can not get pregnant, they are in

psychological

> distress and they are not in a state of health. That don't make us

worse;

> that make us human.

>

> If you find that I am sending negative messages you are wrong. I

am writing,

> as other members of the group, of my feelings. If all the facts

about BPES

> were marvellous: if we wouldn't be worried about surgeries,

photophobia,

> infertility, and so on, this group wouldn't exist, because it

would not be

> necessary. We are here to help each other, to comfort each other

and to be

> sympathetic with other people that is like us. I like this group a

lot, it

> has helped me (and I hope that it will help me and more people in

the

> future), I remain positive for my daughter and for myself, that is

the

> reason why I prefer to face the real facts about BPES. Of course

we can

> choose how to manage our emotions. But emotions are that, and many

times

> they are really difficult to manage, specially in some times of

life as

> adolescence. To manage them correctly we must know well the storm

of

> emotions and psychological hurdles that our sons and daughters

must go

> through.

>

> I have read that BPES is more common among Asians in a book of

paediatrics.

> I have not the reference now, but I will look for it. Nobody of us

is a

> statistic number, but in epidemiological terms all of us are

numbers, the

> incidence and prevalence of diseases, malformations and so on are

measured

> in this way, and as you know the incidence and prevalence varies

in diverse

> ethnic groups. I am sorry if you have felt affronted by my words.

>

> >From: " minnielin202 " <minnielin202@y...>

> >Reply-blepharophimosis

> >blepharophimosis

> >Subject: blepharophimosis Re: BPES does not discriminate....

> >Date: Fri, 06 Jan 2006 18:56:29 -0000

> >

> >Hi ,

> >I would also like to read this statistical report stating that

BPES

> >is more common among Asians. I'm Korean and I believe that I am

not

> >a statistic number.

> >

> >You've brought up true facts in that in some women, BPES can cause

> >infertility. However, I must disagree with you in stating that

BPES

> >causes psychological distrubances. How so?

> >

> >Are you saying that the members of this group have pyshological

> >disturbances? Are you implying that we all have altered health

> >states due to our small eyes?

> >

> >I find that you are sending negative messages and discouraging

> >members who have worked hard to remain strong and positive for

their

> >children and for themselves. We are all going through the same

> >emotional roller coaster rides due to BPES in our lives but that

> >does not mean, nor will it ever mean, we are all psychological

> >disturbed.

> >

> >We all have choices in life. How we choose to manage our emotions

> >are up to us.

> >

> >People will stare. Children will get teased. It is up to us how

we

> >choose to manage them, without any psychological disturbances.

> >

> > > > > It's been a long time that I've visited this group and

> >recently I

> > > > > have been catching up on the postings. I just love this

group

> >and

> > > > > love how supportive all the members can be. Both my

daughter

> >and I

> > > > > have BPES, along with my father and 2 older sisters. We

wish

> >that

> > > > > this group existed during our time! I do feel fortunate

that

> >it

> > > > > exists for my daughter.

> > > > >

> > > > > Some of the postings I've read so far is a bit disturbing.

> >There

> > > > > are couple of postings where BPES is described to be

> > > > > a " disability " . Another posting wrote if it is related to

> >Asians

> > > >or

> > > > > even to orphans. Other postings go as far if BPES is

> > > > > child's weight!

> > > > >

> > > > > I would like to say from experience, that BPES does not

> > > > > discriminate. It is not an Asian, nor an orphan thing.

It is

> >not

> > > >a

> > > > > disability. It is not a cause for low weights in children.

> > > > > Children with BPES are normal children. My daughter and

your

> > > > > daugthers and sons are normal kids. And BPES is really

> >nothing.

> > > >If

> > > > > we emphasize too much on the negative, then we are

teaching our

> > > > > children the wrong thing.

> > > > >

> > > > > What BPES is a genetic anomaly. BPES means small eyes.

BPES

> >means

> > > > > droopy eyelids. And BPES does not mean our kids will live

> >unhappy,

> > > > > unhealthy lives. I grew up happily with my small eyes and

so

> >will

> > > > > my daughter. BPES is cosmetic.

> > > > >

> > > > > I love how there are photos that show different races

across

> >the

> > > > > world. From US, Singapore, to Europe, to Australia. These

> >photos

> > > > > and families are our tools to teach our children with bleph

> >that

> > > > > they are not alone and that they WILL be ok. Perhaps what

was

> >once

> > > > > a " rare " disorder is no longer true. The growth of this

group

> > > >shows

> > > > > how we are not alone.

> > > > >

> > > > > So please believe in the positive of BPES and show your

kids

> >the

> > > > > beauty they possess in those little eyes!

> > > > >

> > > > > Merry Christmas to everyone in this group!

> > > > >

January 11, 2006

> > > > > > > It's been a long time that I've visited this group and

> > > >recently I

> > > > > > > have been catching up on the postings. I just love

this

> > group

> > > >and

> > > > > > > love how supportive all the members can be. Both my

> > daughter

> > > >and I

> > > > > > > have BPES, along with my father and 2 older sisters.

We

> > wish

> > > >that

> > > > > > > this group existed during our time! I do feel

fortunate

> > that

> > > >it

> > > > > > > exists for my daughter.

> > > > > > >

> > > > > > > Some of the postings I've read so far is a bit

disturbing.

> > > >There

> > > > > > > are couple of postings where BPES is described to be

> > > > > > > a " disability " . Another posting wrote if it is related

to

> > > >Asians

> > > > > >or

> > > > > > > even to orphans. Other postings go as far if BPES is

> > related

> > > >to the

> > > > > > > child's weight!

> > > > > > >

> > > > > > > I would like to say from experience, that BPES does not

> > > > > > > discriminate. It is not an Asian, nor an orphan

thing.

> > It is

> > > >not

> > > > > >a

> > > > > > > disability. It is not a cause for low weights in

> children.

> > > > > > > Children with BPES are normal children. My daughter

and

> > your

> > > > > > > daugthers and sons are normal kids. And BPES is really

> > > >nothing.

> > > > > >If

> > > > > > > we emphasize too much on the negative, then we are

> > teaching our

> > > > > > > children the wrong thing.

> > > > > > >

> > > > > > > What BPES is a genetic anomaly. BPES means small

eyes.

> > BPES

> > > >means

> > > > > > > droopy eyelids. And BPES does not mean our kids will

live

> > > >unhappy,

> > > > > > > unhealthy lives. I grew up happily with my small eyes

> and

> > so

> > > >will

> > > > > > > my daughter. BPES is cosmetic.

> > > > > > >

> > > > > > > I love how there are photos that show different races

> > across

> > > >the

> > > > > > > world. From US, Singapore, to Europe, to Australia.

> These

> > > >photos

> > > > > > > and families are our tools to teach our children with

> bleph

> > > >that

> > > > > > > they are not alone and that they WILL be ok. Perhaps

> what

> > was

> > > >once

> > > > > > > a " rare " disorder is no longer true. The growth of

this

> > group

> > > > > >shows

> > > > > > > how we are not alone.

> > > > > > >

> > > > > > > So please believe in the positive of BPES and show your

> > kids

> > > >the

> > > > > > > beauty they possess in those little eyes!

> > > > > > >

> > > > > > > Merry Christmas to everyone in this group!

> > > > > > >

January 12, 2006

Desconozco cual es tu lengua materna, al aprecer al no ser la mía el inglés

no habéis entendido nada, quizás necesites tú más cultura, más lectura y más

conocimiento. No tienes ni pajolera idea de quien soy lo que dejo de ser lo

que leo y lo que dejo de leer. Si la blefarofimosis es o no es más frecuente

en un grupo étncio no tiene nada de importancia para las personas que

consideramos que todos somos iguales. Al aprecer alguno de vosotros no lo

considerais así.

>From: " minnielin202 " <minnielin202@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis Re: BPES does not discriminate....

>Date: Wed, 11 Jan 2006 08:32:39 -0000

>

>,

>

>I'm not going to go into a battle of words with you. You are free

>to express your feelings and thougths like the rest of us. What

>bothers me is your attitude and your connection of psychological

>disturbances to BPES.

>

>Don't you think we ALL have read and researched alot about BPES?

>Don't you think we ALL have spoken to several doctors about BPES?

>Never, have I heard of any doctor advising me of psychological

>disturbances in the adolesence years due to BPES. Never in my life,

>living with BPES, have doctors, nor Jasmine's doctors advised of

>psychological disturbances in the adolesence years due to BPES.

>Personally, I found this insane, idiotic and just plain stupid.

>

>Adolesence is no where near BPES. This is comparing apples to

>oranges. Who in this group experienced perfect adolesence years?

>Adolesence will be hard no matter if the child has BPES or not.

>It's hard because it is what it is. Children in this stage are

>going through many identity definitions. I did not have a good

>experience during my adolesence stage but never would I blame it on

>my BPES. It is what it is...adolesence. And to be warned of it due

>to BPES...well, all I have to say is that I feel sorry for you for

>having non supportive doctors advising you.

>

>It's true that one type of BPES does affect the woman's reproductive

>system, but some of these women have accepted this fact and moved

>onto welcoming the idea of adoption. And for those women who are

>carrying the type of BPES that affects their reproductive system, do

>you think they want to read or be told they have psychological

>disturbances. It's like calling a mentally handicapped

>person, " You're crazy! " to his face. A little discretion, please.

>

>You say you are positive, fine, I guess I can believe you.

>However, you also have to face the real facts about adolesence.

>Would you be concerned of your daughter's adolesence if she didnt'

>have BPES?

>

>The facts are your daughter and my daughter will have a tough

>adolesence years because that's what life is. Your daughter will

>get teased in school because that's what children do. My niece and

>nephews who have huge eyes often get teased. So are they

>psychological disturbed? What's the reason for them to get teased?

>Will they have tough adolesence years? Yes, because that's life;

>that's reality. It's part of growing up. Why do you think there are

>several books on adolesence? Or support groups for managing children

>through the adolesence years? Same reasons why this group exists;

>To educate, to support and to comfort each other.

>

>You want to prepare your daughter for these years and protect her

>from the harm of adolesence? Well, you can do it by not believing

>she will be pshychological disturbed. And finding yourself a new,

>more supportive doctor won't hurt either.

>

>, your daughter and my daughter and the rest of this group's

>daughers and sons WILL BE OK. I believe that our kids will have

>normal lives. They are no different from big eyed kids. Your

>daughter will be fine. The last thing you want to do is bring upon

>your fear of psychological disturbances onto your daughter. Count

>your blessings that BPES is the only thing she has (I'm assuming

>this). And don't get too overwhelmed with the " facts of BPES " and

>the psychological disturbances. Spend this energy in teaching your

>daughter to smile at strangers who are staring and to talk about

>BPES openly. Go to her school and teach her class what you have

>read, minus what the doctors have been telling you. This little tip

>was given to me from an experienced mom who both her and her

>daughter has BPES and they are living happily ever after. Her child

>is the happiest kid on the block. Do you think this child's BPES

>is affecting her quality of life? No, and that's because her mom

>didn't allow it.

>

>So, I look forward to your response with the pediatrics book you

>have where it states BPES is more common among Asians. Perhaps, a

>little less reading and more nurturing of yourself and of your

>daughter may do you both some good!

>

>Min

>

> > > > > > It's been a long time that I've visited this group and

> > >recently I

> > > > > > have been catching up on the postings. I just love this

>group

> > >and

> > > > > > love how supportive all the members can be. Both my

>daughter

> > >and I

> > > > > > have BPES, along with my father and 2 older sisters. We

>wish

> > >that

> > > > > > this group existed during our time! I do feel fortunate

>that

> > >it

> > > > > > exists for my daughter.

> > > > > >

> > > > > > Some of the postings I've read so far is a bit disturbing.

> > >There

> > > > > > are couple of postings where BPES is described to be

> > > > > > a " disability " . Another posting wrote if it is related to

> > >Asians

> > > > >or

> > > > > > even to orphans. Other postings go as far if BPES is

>related

> > >to the

> > > > > > child's weight!

> > > > > >

> > > > > > I would like to say from experience, that BPES does not

> > > > > > discriminate. It is not an Asian, nor an orphan thing.

>It is

> > >not

> > > > >a

> > > > > > disability. It is not a cause for low weights in children.

> > > > > > Children with BPES are normal children. My daughter and

>your

> > > > > > daugthers and sons are normal kids. And BPES is really

> > >nothing.

> > > > >If

> > > > > > we emphasize too much on the negative, then we are

>teaching our

> > > > > > children the wrong thing.

> > > > > >

> > > > > > What BPES is a genetic anomaly. BPES means small eyes.

>BPES

> > >means

> > > > > > droopy eyelids. And BPES does not mean our kids will live

> > >unhappy,

> > > > > > unhealthy lives. I grew up happily with my small eyes and

>so

> > >will

> > > > > > my daughter. BPES is cosmetic.

> > > > > >

> > > > > > I love how there are photos that show different races

>across

> > >the

> > > > > > world. From US, Singapore, to Europe, to Australia. These

> > >photos

> > > > > > and families are our tools to teach our children with bleph

> > >that

> > > > > > they are not alone and that they WILL be ok. Perhaps what

>was

> > >once

> > > > > > a " rare " disorder is no longer true. The growth of this

>group

> > > > >shows

> > > > > > how we are not alone.

> > > > > >

> > > > > > So please believe in the positive of BPES and show your

>kids

> > >the

> > > > > > beauty they possess in those little eyes!

> > > > > >

> > > > > > Merry Christmas to everyone in this group!

> > > > > >

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