Re: Surgery? Its sickening

November 18, 2007

Honey, it's not always about the cosmetic side of things that we get the surgery done. I'm very happy for you that there has been a supportive family around you, not all of us are that lucky, hence the support group.

Do you seriously think that the parents of these children do not weigh up the pros and cons of having the surgery on their young children? It's not exactly day surgery, and for goodness sakes, I don't think any of us look 'normal' even after the surgeries. (look at my photos ~Belinda~... I was still bullied all through school)

In my case my parents waited a little too long to have the surgery to lift my eyelids. Because they hesitated, my vision didn't develop properly in my left eye, so to be able to see anything, I have to hold it less than an inch away from that eye. Luckily I have pretty good vision in my Right eye, or else I would be legally blind.

Our children are precious before and after the surgery. They are beautiful before and after the surgery. This is a support group for the family and friends of people with BPES. As far as I can tell we don't hold it against anyone who chooses to not go through with the surgery, nor do we shun people for deciding to go through with it..... to do either of those would be the opposite of supportive.

The fact remains that it is not an easy life with BPES, in a global society that frowns upon abnormality. Having someone to talk to who has been through the same things as we have makes life a little more bearable. Not to mention having top notch information at hand makes our decisions more informed and far more equally balanced.

Please feel blessed that you have the life you have.

We may look a little different but we all see the same.

Belinda

Brisbane Australia

blepharophimosis Surgery? Its sickening

Im struggling right now to write this post with some sort of tact. I

thought this was a support group for people with "blepharophimosis"

but to me it seems like surgery is what is being supported....

I would never dream of having surgery. What would i tell my child,

when it was born, with eyes like me? How could i justify it, and tell

him or her that she is beautiful, except one thing, which surgery

could "fix"? How could i make him face the world alone, if i had went

through surgery to get 'normal' eyes? The child would come out with a

perception innately that something was wrong with him. Why else would

mom have changed herself, if there wasnt a problem?

I hear of kids going through 3 or 4 surgeries. I dont know if non

affected parents have a complete understanding of just

how...disturbing this is.

In my family, people have had eyes like mine since before my great

grandmother. I cant imagine what it would be like for two parents

without the eyes to have a kid with the eyes. They must feel

estranged, upset, scared, i dont know.

But out of the bottom of my heart i would urge every single parent

who ever has a child with the eyes to think about what they are

doing.

I grew up with family, constantly telling me i was beautiful, that

there was nothing wrong with me and i had as much right to be on the

earth as anyone else. I dont know what it would be like to be alone,

never seeing a family member with eyes like yours, and then to have

your parents show you in the direction of surgery.

My eyes dont give me a huge vision problem, i dont even have ANY

vision problems. So for an unaffected parent to give their child

surgery at the age of 3 or 5 or something just really really upsets

me. I was taught love and acceptance of peoples differences.

I have been mocked, ridiculed and degraded my entire life by people

who dont understand because of my eyes. But at the same time, i would

never get surgery to fix my outside appearance. It wont change my

genes.

Fuck being normal. Seriously. The people who hold my company love and

accept me for who I am. Ive waded through the callous assholes, and

the friends i have now are true friends. A little bit of extra skin

around my eyes doesnt change the way they feel about me. Sometimes i

thank god i was born this way. Now i know people love me for me

instead of strictly my appearance.

This post is huge and rather unorganized...but we aren't diseased,

people. We have extra skin on our eyelids, and some of us have vision

restrictions. We have all of our limbs. We can talk, be articulate,

create things...Any time i feel bad about my eyes i just think about

people confined to wheel chairs, people who cant take care of

themselves or who have mental disabilities.

Do people put their children through surgery saying they want to make

their children feel better about themselves???

I didnt even know my eyes were any different than anyone elses till i

was about 5, and even then it was a tentative understanding that i

was different.

I think maybe its the parents who feel uncomfortable. Maybe they want

to make themselves feel better about the way their child looks, and

not vice versa.

Im not trying to attack anyone personally, and if you want to call me

an asshole, or hate my words, please feel free. But i will tell you

that i live this everyday.

My cousin went to go have corrective surgery on her eyes. The only

one in our entire family out of three generations. The doctors messed

up the operation and now she has limited function of one eye. You

tell me what is better.

Im really upset about this 'support' group. Im upset that i even

found it. I thought i would be able to share experiences with people

like me. I didnt know that i would find people like me, going through

surgery, so they wouldnt be like me.

Email and AIM finally together. You've gotta check out free AOL Mail!

November 18, 2007

Well said. You all have my support and love.shewhomustbekept@... wrote: Honey, it's not always about the cosmetic side of things that we get the surgery done. I'm very happy for you that there has been a supportive family around you, not all of us are that lucky, hence the support group. Do you seriously think that the parents of these children do not weigh up the pros and cons of having the surgery on their young children? It's not exactly day surgery, and for goodness sakes, I don't think any of us look 'normal'

even after the surgeries. (look at my photos ~Belinda~... I was still bullied all through school)In my case my parents waited a little too long to have the surgery to lift my eyelids. Because they hesitated, my vision didn't develop properly in my left eye, so to be able to see anything, I have to hold it less than an inch away from that eye. Luckily I have pretty good vision in my Right eye, or else I would be legally blind.Our children are precious before and after the surgery. They are beautiful before and after the surgery. This is a support group for the family and friends of people with BPES. As far as I can tell we don't hold it against anyone who chooses to not go through with the surgery, nor do we shun people for deciding to go through with it..... to do either of those would be the opposite of supportive.The fact remains that it is not an easy life with BPES, in a global society that frowns upon abnormality.

Having someone to talk to who has been through the same things as we have makes life a little more bearable. Not to mention having top notch information at hand makes our decisions more informed and far more equally balanced.Please feel blessed that you have the life you have.We may look a little different but we all see the same.Belinda Brisbane Australia blepharophimosis Surgery? Its sickening Im struggling right now to write this post with some sort of tact. I thought this was a support group for people with "blepharophimosis" but to me it seems like surgery is what is being supported.... I would never dream of

having surgery. What would i tell my child, when it was born, with eyes like me? How could i justify it, and tell him or her that she is beautiful, except one thing, which surgery could "fix"? How could i make him face the world alone, if i had went through surgery to get 'normal' eyes? The child would come out with a perception innately that something was wrong with him. Why else would mom have changed herself, if there wasnt a problem? I hear of kids going through 3 or 4 surgeries. I dont know if non affected parents have a complete understanding of just how...disturbing this is. In my family, people have had eyes like mine since before my great grandmother. I cant imagine what it would be like for two parents without the eyes to have a kid with the eyes. They must feel estranged, upset, scared, i dont know. But out of the bottom of my heart i would urge every single parent who ever has a child with

the eyes to think about what they are doing. I grew up with family, constantly telling me i was beautiful, that there was nothing wrong with me and i had as much right to be on the earth as anyone else. I dont know what it would be like to be alone, never seeing a family member with eyes like yours, and then to have your parents show you in the direction of surgery. My eyes dont give me a huge vision problem, i dont even have ANY vision problems. So for an unaffected parent to give their child surgery at the age of 3 or 5 or something just really really upsets me. I was taught love and acceptance of peoples differences. I have been mocked, ridiculed and degraded my entire life by people who dont understand because of my eyes. But at the same time, i would never get surgery to fix my outside appearance. It wont change my genes. Fuck being normal. Seriously. The people who hold my company love and

accept me for who I am. Ive waded through the callous assholes, and the friends i have now are true friends. A little bit of extra skin around my eyes doesnt change the way they feel about me. Sometimes i thank god i was born this way. Now i know people love me for me instead of strictly my appearance. This post is huge and rather unorganized...but we aren't diseased, people. We have extra skin on our eyelids, and some of us have vision restrictions. We have all of our limbs. We can talk, be articulate, create things...Any time i feel bad about my eyes i just think about people confined to wheel chairs, people who cant take care of themselves or who have mental disabilities. Do people put their children through surgery saying they want to make their children feel better about themselves??? I didnt even know my eyes were any different than anyone elses till i was about 5, and even then it was

a tentative understanding that i was different. I think maybe its the parents who feel uncomfortable. Maybe they want to make themselves feel better about the way their child looks, and not vice versa. Im not trying to attack anyone personally, and if you want to call me an asshole, or hate my words, please feel free. But i will tell you that i live this everyday. My cousin went to go have corrective surgery on her eyes. The only one in our entire family out of three generations. The doctors messed up the operation and now she has limited function of one eye. You tell me what is better. Im really upset about this 'support' group. Im upset that i even found it. I thought i would be able to share experiences with people like me. I didnt know that i would find people like me, going through surgery, so they wouldnt be like me. Email and AIM finally together. You've gotta check out free AOL Mail!

Be a better sports nut! Let your teams follow you with Mobile. Try it now.

November 18, 2007

What is even more sickening is people who judge others who may have a different view or belief than they do.........................I certainly hope that my daughter (who is thrilled to have had surgery , and would like even more) never shares your anger for people who choose NOT to have surgery! That would make her almost like one of those "bullies" we have tried so hard to rise above.....If you are happy in your decision to refrain from surgery, then be happy. We will do the same, and be happy for you.h <kureeji@...> wrote: Im struggling right now to write this post with some sort of tact. I thought this was a support group for people with "blepharophimosis" but to me it seems like surgery is what is being supported.... I would never dream of having surgery. What would i tell my child, when it was born, with eyes like me? How could i justify it, and tell him or her that she is beautiful, except one thing, which surgery could "fix"? How could i make him face the world alone, if i had went through surgery to get 'normal' eyes? The child would come out with a perception innately that something was wrong with him. Why else would mom have changed herself, if there wasnt a problem? I hear of kids going through 3 or 4 surgeries. I dont know if non affected parents have a complete understanding of just how...disturbing this is. In my family, people have had eyes like mine since before my great

grandmother. I cant imagine what it would be like for two parents without the eyes to have a kid with the eyes. They must feel estranged, upset, scared, i dont know. But out of the bottom of my heart i would urge every single parent who ever has a child with the eyes to think about what they are doing. I grew up with family, constantly telling me i was beautiful, that there was nothing wrong with me and i had as much right to be on the earth as anyone else. I dont know what it would be like to be alone, never seeing a family member with eyes like yours, and then to have your parents show you in the direction of surgery. My eyes dont give me a huge vision problem, i dont even have ANY vision problems. So for an unaffected parent to give their child surgery at the age of 3 or 5 or something just really really upsets me. I was taught love and acceptance of peoples differences. I

have been mocked, ridiculed and degraded my entire life by people who dont understand because of my eyes. But at the same time, i would never get surgery to fix my outside appearance. It wont change my genes. Fuck being normal. Seriously. The people who hold my company love and accept me for who I am. Ive waded through the callous assholes, and the friends i have now are true friends. A little bit of extra skin around my eyes doesnt change the way they feel about me. Sometimes i thank god i was born this way. Now i know people love me for me instead of strictly my appearance. This post is huge and rather unorganized...but we aren't diseased, people. We have extra skin on our eyelids, and some of us have vision restrictions. We have all of our limbs. We can talk, be articulate, create things...Any time i feel bad about my eyes i just think about people confined to wheel chairs, people who

cant take care of themselves or who have mental disabilities. Do people put their children through surgery saying they want to make their children feel better about themselves??? I didnt even know my eyes were any different than anyone elses till i was about 5, and even then it was a tentative understanding that i was different. I think maybe its the parents who feel uncomfortable. Maybe they want to make themselves feel better about the way their child looks, and not vice versa. Im not trying to attack anyone personally, and if you want to call me an asshole, or hate my words, please feel free. But i will tell you that i live this everyday. My cousin went to go have corrective surgery on her eyes. The only one in our entire family out of three generations. The doctors messed up the operation and now she has limited function of one eye. You tell me what is better.

Im really upset about this 'support' group. Im upset that i even found it. I thought i would be able to share experiences with people like me. I didnt know that i would find people like me, going through surgery, so they wouldnt be like me.

Be a better sports nut! Let your teams follow you with Mobile. Try it now.

November 19, 2007

I can assure you that I did not subject my 22-month-old daughter to

surgery just because I am vain. In fact, I consulted 2 pediatric

ophthalmologists before I decided to go through with it. If your

vision isn't affected by your condition, you are very lucky. My

daughter, on the other hand, was barely able to see at all. She had

to tilt her head so far back in order to see that the doctors

worried that she would have life-long problems with her neck if we

waited any longer. Plus, she had congenital epiblepharon (her

bottom lashes rolled in and rubbed against her eyes). The constant

rubbing was starting to cause scaring on her eyes. Because the

surgery was preformed by an ophthalmic plastic surgeon my insurance

company wouldn't agree to pay for it unless it was determined to

be " medically necessary " . It was.

Personally, I loved my daughter's " little eyes " . See, she was

adopted at 19 months old, and I feel in love with the pictures of

those little eyes even before I met the child. I actually made it a

point to take her in and have professional portraits done before the

surgery so that we would always be able to see the beautiful face

she was born with. If the surgery was purely cosmetic, it would

never have happened. My daughter had surgery to save her sight, not

because I was embarrassed or uncomfortable with her looks. She was,

is, and always will be absolutely beautiful.

And surgery or not, my daughter still has blepharophimosis. Surgery

can help her vision, but it is never going to change her

chromosomes.

Donna

November 19, 2007

Dear, dear h -- I was born 51 years ago with BPES although I

didn't find out until just this year what it was when I stumbled upon

this website and then followed through on more research. I am the

only one in my family with BPES. I had 10 surgeries by the age of 10.

I was a severe case with an inability to see without some kind of

surgery. I lost the sight in my left eye due to lack of development

in my early years because of the BPES. The surgeries were necessary

for my sight. My right eye remained useful but I have a HUGE

correction and without glasses I am legally blind. Despite the fact

that surgeries saved my sight, I do know that my parents, in their

ignorance of this congenital disorder, if you will, were extremely

concerned for me because of my appearance, as well. And they should

have been. There was no way that I looked normal and they knew that

my future would most definitely include painful encounters with

insensitive individuals. What parent wouldn't want to do whatever

they could to shield their child from that? It's not about cosmetic

surgery, h. It's about loving one's child. It's all about

love. I can tell that even though you did not have surgeries and your

family chose a different path in which to approach your BPES with

you -- you were still hurt from it, just like the rest of us. You

have anger in you. Anger is born from hurt and pain. I understand

your hurt. I am just like you. I had to grow up with BPES just like

you. My surgeries, although many, were mostly botched because my

doctors didn't really know what they were dealing with back in the

1950's. I'm thankful, however, that I am surrounded by people who

accept me the way that I am and that I am able to forgive those who

have hurt me in the past with their mean and painful remarks. Please

don't sink into the temptation to judge others situations that you

know nothing about. You may have BPES like the children of these

parents on this website support group but BPES takes many forms and

severities, and you do not know individual situations so you are not

entitled to judge them without knowledge. I have empathy for you

because you are kind of like my sister in that you are afflicted with

the same thing that I am. We all deal with afflictions differently,

h. Let's lift each other up and support each other's efforts

to live life to the best of our abilities, shall we? It's so much

nicer that way.

With much care,

Dannah

(dannahbananan16)

--- In blepharophimosis , " h " <kureeji@...>

wrote:

>

> Im struggling right now to write this post with some sort of tact.

I

> thought this was a support group for people with " blepharophimosis "

> but to me it seems like surgery is what is being supported....

>

> I would never dream of having surgery. What would i tell my child,

> when it was born, with eyes like me? How could i justify it, and

tell

> him or her that she is beautiful, except one thing, which surgery

> could " fix " ? How could i make him face the world alone, if i had

went

> through surgery to get 'normal' eyes? The child would come out with

a

> perception innately that something was wrong with him. Why else

would

> mom have changed herself, if there wasnt a problem?

>

> I hear of kids going through 3 or 4 surgeries. I dont know if non

> affected parents have a complete understanding of just

> how...disturbing this is.

>

> In my family, people have had eyes like mine since before my great

> grandmother. I cant imagine what it would be like for two parents

> without the eyes to have a kid with the eyes. They must feel

> estranged, upset, scared, i dont know.

>

> But out of the bottom of my heart i would urge every single parent

> who ever has a child with the eyes to think about what they are

> doing.

>

> I grew up with family, constantly telling me i was beautiful, that

> there was nothing wrong with me and i had as much right to be on

the

> earth as anyone else. I dont know what it would be like to be

alone,

> never seeing a family member with eyes like yours, and then to have

> your parents show you in the direction of surgery.

>

> My eyes dont give me a huge vision problem, i dont even have ANY

> vision problems. So for an unaffected parent to give their child

> surgery at the age of 3 or 5 or something just really really upsets

> me. I was taught love and acceptance of peoples differences.

>

> I have been mocked, ridiculed and degraded my entire life by people

> who dont understand because of my eyes. But at the same time, i

would

> never get surgery to fix my outside appearance. It wont change my

> genes.

>

> Fuck being normal. Seriously. The people who hold my company love

and

> accept me for who I am. Ive waded through the callous assholes, and

> the friends i have now are true friends. A little bit of extra skin

> around my eyes doesnt change the way they feel about me. Sometimes

i

> thank god i was born this way. Now i know people love me for me

> instead of strictly my appearance.

>

> This post is huge and rather unorganized...but we aren't diseased,

> people. We have extra skin on our eyelids, and some of us have

vision

> restrictions. We have all of our limbs. We can talk, be articulate,

> create things...Any time i feel bad about my eyes i just think

about

> people confined to wheel chairs, people who cant take care of

> themselves or who have mental disabilities.

>

> Do people put their children through surgery saying they want to

make

> their children feel better about themselves???

>

> I didnt even know my eyes were any different than anyone elses till

i

> was about 5, and even then it was a tentative understanding that i

> was different.

>

> I think maybe its the parents who feel uncomfortable. Maybe they

want

> to make themselves feel better about the way their child looks, and

> not vice versa.

>

> Im not trying to attack anyone personally, and if you want to call

me

> an asshole, or hate my words, please feel free. But i will tell you

> that i live this everyday.

>

> My cousin went to go have corrective surgery on her eyes. The only

> one in our entire family out of three generations. The doctors

messed

> up the operation and now she has limited function of one eye. You

> tell me what is better.

>

> Im really upset about this 'support' group. Im upset that i even

> found it. I thought i would be able to share experiences with

people

> like me. I didnt know that i would find people like me, going

through

> surgery, so they wouldnt be like me.

>

November 19, 2007

Well said Micah.

My daughter Mayowa waited till she was older to have surgery. Cos we were quite happy with her eyes until her eye test shows that due to light not getting thru to her pulpils she is nearly blind in her right eye. This we are told is permanent damage. I kick myself hard daily for my ignorance. My younger daughter who also has Bleph had her surgery sooner. Her vision is 20/20. She did not want surgery but it was neccesary.

It it important that people are able to express themselves without fear.

Also children do go on this site. Lets keep things nice

Joyce London (mother of Mayowa and Tina)

Cheers

November 19, 2007

Not that I owe anyone an explanation, because that is not the point, but my daughter's surgery WAS MEDICALLY NECESSARY to insure proper development of her vision. I was sick over the fact that those beautiful eyes that I fell in love with would change in appearance. Well, appearance is not important, and after the surgery, I fell equally in love with the eyes that stared back at me with with gratitude. My daughter thanks me every day for loving her enough to correct a defect that needed correction. My daughter was not as "lucky" as you, she DID require surgery.That said, we are not angry or bitter towards people who choose to have face lifts, boob jobs, or sex changes. We do not judge others. Maybe that is due to the "support system" we have in our family.donna haskins <dhaskins214@...> wrote: What is even more sickening is people who judge others who may have a different view or belief than they do.........................I certainly hope that my daughter (who is thrilled to have had surgery , and would like even more) never shares your anger for people who choose NOT to have surgery! That would make her almost like one of those "bullies" we have tried so hard to rise above.....If you are happy in your decision to refrain from surgery, then be happy. We will do the same, and be happy for you.h <kureejihotmail> wrote: Im struggling right now to write this post with some sort of tact. I thought this was a support group for people with "blepharophimosis" but to me it seems like surgery is what is being supported.... I would never dream of having surgery. What would i tell my child, when it was born, with eyes like me? How could i justify it, and tell him or her that she is beautiful, except one thing, which surgery could "fix"? How could i make him face the world alone, if i had went through surgery to get 'normal' eyes? The child would come out with a perception innately that something was wrong with him. Why else would mom have changed herself, if there wasnt a problem? I hear of kids going through 3 or 4 surgeries. I dont know if non affected parents have a complete understanding of just how...disturbing this is. In my family,

people have had eyes like mine since before my great grandmother. I cant imagine what it would be like for two parents without the eyes to have a kid with the eyes. They must feel estranged, upset, scared, i dont know. But out of the bottom of my heart i would urge every single parent who ever has a child with the eyes to think about what they are doing. I grew up with family, constantly telling me i was beautiful, that there was nothing wrong with me and i had as much right to be on the earth as anyone else. I dont know what it would be like to be alone, never seeing a family member with eyes like yours, and then to have your parents show you in the direction of surgery. My eyes dont give me a huge vision problem, i dont even have ANY vision problems. So for an unaffected parent to give their child surgery at the age of 3 or 5 or something just really really upsets me. I was taught

love and acceptance of peoples differences. I have been mocked, ridiculed and degraded my entire life by people who dont understand because of my eyes. But at the same time, i would never get surgery to fix my outside appearance. It wont change my genes. Fuck being normal. Seriously. The people who hold my company love and accept me for who I am. Ive waded through the callous assholes, and the friends i have now are true friends. A little bit of extra skin around my eyes doesnt change the way they feel about me. Sometimes i thank god i was born this way. Now i know people love me for me instead of strictly my appearance. This post is huge and rather unorganized...but we aren't diseased, people. We have extra skin on our eyelids, and some of us have vision restrictions. We have all of our limbs. We can talk, be articulate, create things...Any time i feel bad about my eyes i just think

about people confined to wheel chairs, people who cant take care of themselves or who have mental disabilities. Do people put their children through surgery saying they want to make their children feel better about themselves??? I didnt even know my eyes were any different than anyone elses till i was about 5, and even then it was a tentative understanding that i was different. I think maybe its the parents who feel uncomfortable. Maybe they want to make themselves feel better about the way their child looks, and not vice versa. Im not trying to attack anyone personally, and if you want to call me an asshole, or hate my words, please feel free. But i will tell you that i live this everyday. My cousin went to go have corrective surgery on her eyes. The only one in our entire family out of three generations. The doctors messed up the operation and now she has

limited function of one eye. You tell me what is better. Im really upset about this 'support' group. Im upset that i even found it. I thought i would be able to share experiences with people like me. I didnt know that i would find people like me, going through surgery, so they wouldnt be like me. Be a better sports nut! Let your teams follow you with Mobile. Try it now.

Never miss a thing. Make your homepage.

November 19, 2007

I dont judge those who have surgery. I just think it would be helpful for the child to make the decision for themselves, when they have an understanding of what they are doing.

Its a decision that i personally believe the child should be able to make when they are old enough to understand. Not when they are 3 months old, and dont even have a concept of self yet.

blepharophimosis From: dhaskins214@...Date: Sun, 18 Nov 2007 15:46:49 -0800Subject: Re: blepharophimosis Surgery? Its sickening

What is even more sickening is people who judge others who may have a different view or belief than they do.........................I certainly hope that my daughter (who is thrilled to have had surgery , and would like even more) never shares your anger for people who choose NOT to have surgery! That would make her almost like one of those "bullies" we have tried so hard to rise above.....If you are happy in your decision to refrain from surgery, then be happy. We will do the same, and be happy for you.h <kureejihotmail> wrote:

Im struggling right now to write this post with some sort of tact. I thought this was a support group for people with "blepharophimosis" but to me it seems like surgery is what is being supported.... I would never dream of having surgery. What would i tell my child, when it was born, with eyes like me? How could i justify it, and tell him or her that she is beautiful, except one thing, which surgery could "fix"? How could i make him face the world alone, if i had went through surgery to get 'normal' eyes? The child would come out with a perception innately that something was wrong with him. Why else would mom have changed herself, if there wasnt a problem? I hear of kids going through 3 or 4 surgeries. I dont know if non affected parents have a complete understanding of just how...disturbing this is. In my family, people have had eyes like mine since before my great grandmother. I cant imagine what it would be like for two parents without the eyes to have a kid with the eyes. They must feel estranged, upset, scared, i dont know. But out of the bottom of my heart i would urge every single parent who ever has a child with the eyes to think about what they are doing. I grew up with family, constantly telling me i was beautiful, that there was nothing wrong with me and i had as much right to be on the earth as anyone else. I dont know what it would be like to be alone, never seeing a family member with eyes like yours, and then to have your parents show you in the direction of surgery. My eyes dont give me a huge vision problem, i dont even have ANY vision problems. So for an unaffected parent to give their child surgery at the age of 3 or 5 or something just really really upsets me. I was taught love and acceptance of peoples differences. I have been mocked, ridiculed and degraded my entire life by people who dont understand because of my eyes. But at the same time, i would never get surgery to fix my outside appearance. It wont change my genes. Fuck being normal. Seriously. The people who hold my company love and accept me for who I am. Ive waded through the callous assholes, and the friends i have now are true friends. A little bit of extra skin around my eyes doesnt change the way they feel about me. Sometimes i thank god i was born this way. Now i know people love me for me instead of strictly my appearance. This post is huge and rather unorganized...but we aren't diseased, people. We have extra skin on our eyelids, and some of us have vision restrictions. We have all of our limbs. We can talk, be articulate, create things...Any time i feel bad about my eyes i just think about people confined to wheel chairs, people who cant take care of themselves or who have mental disabilities. Do people put their children through surgery saying they want to make their children feel better about themselves??? I didnt even know my eyes were any different than anyone elses till i was about 5, and even then it was a tentative understanding that i was different. I think maybe its the parents who feel uncomfortable. Maybe they want to make themselves feel better about the way their child looks, and not vice versa. Im not trying to attack anyone personally, and if you want to call me an asshole, or hate my words, please feel free. But i will tell you that i live this everyday. My cousin went to go have corrective surgery on her eyes. The only one in our entire family out of three generations. The doctors messed up the operation and now she has limited function of one eye. You tell me what is better. Im really upset about this 'support' group. Im upset that i even found it. I thought i would be able to share experiences with people like me. I didnt know that i would find people like me, going through surgery, so they wouldnt be like me.

Be a better sports nut! Let your teams follow you with Mobile. Try it now. Share life as it happens with the new Windows Live. Share now!

November 19, 2007

I understand where you are coming from whole heartedly. I was referring to surgery strictly for cosmetic purposes, when the child is too young to be aware of whats happening to them.

I saw a post in another group where a mother who was unaffected had a child with it. She asked what development problems were associated with the condition.

It really shook me to the core and scared me, about how uneducated people are. And the possibility of people like that who are ill informed, putting their children through surgery, really really scared me.

My youngest cousin may have to go through surgery, her eyes are smaller than mine and she has to tilt her head. Im not judging anyone who goes through surgery to improve their vision. At the same time, i wonder what unaffected parents see as a vision problem? I had to tilt my head when i was younger. People still come up to me and ask me "Can you see?"

I have the same range of vision as anyone else. Most of my family does, except my youngest cousin, being the only one who may *need*

surgery.

The only way a parent will know if their child is having a vision problem is to give it some time. All children with it will tilt their head. They are short, and paired with the eyes, you get the tilt. But my mother says that as i grew taller the habit was completely eliminated.

I can understand how that would scare parents, seeing their children tilt their head like that. What else can be assumed, but that there is a vision problem?

My point is the only way a parent will know what the world looks like through their childrens eyes is to WAIT TILL THEY CAN TELL YOU. I understand that epiblepharon agitated the situation and i understand that you wanted the best for her. I understand.

But as a person who has blepharophimosis with no other conditions, im very lucky that my mother didnt take me to have surgery when i was young. Even though i tilted my head, and my eyes may seem like i have a vision problem, i dont. And you know what? Until this group, not one doctor has ever given me any information about this. Doctors dont always have the answers, they are just people like me and you.

Psychologically and socially, i have no idea how different my life would be if i had been operated on at a young age.

Thats where im coming from, and i didnt mean to upset anyone...it has enriched my life to read everyones stories.

I put a picture of me in the gallery if anyone wants to know what my eyes look like. I can put up ones of me as a child as well.

blepharophimosis From: donnat65@...Date: Mon, 19 Nov 2007 00:38:09 +0000Subject: blepharophimosis Re: Surgery? Its sickening

I can assure you that I did not subject my 22-month-old daughter to surgery just because I am vain. In fact, I consulted 2 pediatric ophthalmologists before I decided to go through with it. If your vision isn't affected by your condition, you are very lucky. My daughter, on the other hand, was barely able to see at all. She had to tilt her head so far back in order to see that the doctors worried that she would have life-long problems with her neck if we waited any longer. Plus, she had congenital epiblepharon (her bottom lashes rolled in and rubbed against her eyes). The constant rubbing was starting to cause scaring on her eyes. Because the surgery was preformed by an ophthalmic plastic surgeon my insurance company wouldn't agree to pay for it unless it was determined to be "medically necessary". It was. Personally, I loved my daughter's "little eyes". See, she was adopted at 19 months old, and I feel in love with the pictures of those little eyes even before I met the child. I actually made it a point to take her in and have professional portraits done before the surgery so that we would always be able to see the beautiful face she was born with. If the surgery was purely cosmetic, it would never have happened. My daughter had surgery to save her sight, not because I was embarrassed or uncomfortable with her looks. She was, is, and always will be absolutely beautiful.And surgery or not, my daughter still has blepharophimosis. Surgery can help her vision, but it is never going to change her chromosomes. Donna Connect and share in new ways with Windows Live. Connect now!

November 19, 2007

Hi there h,

Tact was never a strong suit of mine either, so here goes.

You did yourself a disservice with this post - this email oozed ignorance.

Sit down for an afternoon and research the symptoms of bleph. Make sure you

look at a variety of pictures posted of people with the condition. You will

notice an important feature that many of the people (most of them small

babies) share. They cannot open their eyes. I don't mean that their eyes

were small. I'll say it again, as I get the impression clarity is key here.

They cannot open their eyes wide enough to see properly.

Now, aside from the obvious, there is a serious issue with having your

pupils permanently covered, and it is this. If a number of years pass and

your pupils are not exposed to light, you go blind. It is very important

that you believe me here h - that is not good. You see, I am as into

self acceptance as you are. Like you, I am 3rd generation bleph. But there

is a catch here - the condition many of us have makes it impossible to see

without surgical treatment. By this I don't mean that people titter behind

your back during recess. I mean that some of the kids here would go blind

without surgery.

h - the outrage you display, actually, isn't always a bad thing by

any means. Your ignorance, unfortunately, is. Get educated about the

condition you have, so that you in turn can be of service to those afflicted

even more severely than you are.

All the best, Micah

(3rd generation bleph, and partially blind in my right eye)

blepharophimosis Surgery? Its sickening

Im struggling right now to write this post with some sort of tact. I

thought this was a support group for people with " blepharophimosis "

but to me it seems like surgery is what is being supported....

I would never dream of having surgery. What would i tell my child,

when it was born, with eyes like me? How could i justify it, and tell

him or her that she is beautiful, except one thing, which surgery

could " fix " ? How could i make him face the world alone, if i had went

through surgery to get 'normal' eyes? The child would come out with a

perception innately that something was wrong with him. Why else would

mom have changed herself, if there wasnt a problem?

I hear of kids going through 3 or 4 surgeries. I dont know if non

affected parents have a complete understanding of just

how...disturbing this is.

In my family, people have had eyes like mine since before my great

grandmother. I cant imagine what it would be like for two parents

without the eyes to have a kid with the eyes. They must feel

estranged, upset, scared, i dont know.

But out of the bottom of my heart i would urge every single parent

who ever has a child with the eyes to think about what they are

doing.

I grew up with family, constantly telling me i was beautiful, that

there was nothing wrong with me and i had as much right to be on the

earth as anyone else. I dont know what it would be like to be alone,

never seeing a family member with eyes like yours, and then to have

your parents show you in the direction of surgery.

My eyes dont give me a huge vision problem, i dont even have ANY

vision problems. So for an unaffected parent to give their child

surgery at the age of 3 or 5 or something just really really upsets

me. I was taught love and acceptance of peoples differences.

I have been mocked, ridiculed and degraded my entire life by people

who dont understand because of my eyes. But at the same time, i would

never get surgery to fix my outside appearance. It wont change my

genes.

Fuck being normal. Seriously. The people who hold my company love and

accept me for who I am. Ive waded through the callous assholes, and

the friends i have now are true friends. A little bit of extra skin

around my eyes doesnt change the way they feel about me. Sometimes i

thank god i was born this way. Now i know people love me for me

instead of strictly my appearance.

This post is huge and rather unorganized...but we aren't diseased,

people. We have extra skin on our eyelids, and some of us have vision

restrictions. We have all of our limbs. We can talk, be articulate,

create things...Any time i feel bad about my eyes i just think about

people confined to wheel chairs, people who cant take care of

themselves or who have mental disabilities.

Do people put their children through surgery saying they want to make

their children feel better about themselves???

I didnt even know my eyes were any different than anyone elses till i

was about 5, and even then it was a tentative understanding that i

was different.

I think maybe its the parents who feel uncomfortable. Maybe they want

to make themselves feel better about the way their child looks, and

not vice versa.

Im not trying to attack anyone personally, and if you want to call me

an asshole, or hate my words, please feel free. But i will tell you

that i live this everyday.

My cousin went to go have corrective surgery on her eyes. The only

one in our entire family out of three generations. The doctors messed

up the operation and now she has limited function of one eye. You

tell me what is better.

Im really upset about this 'support' group. Im upset that i even

found it. I thought i would be able to share experiences with people

like me. I didnt know that i would find people like me, going through

surgery, so they wouldnt be like me.

November 19, 2007

I understand where you are coming from.

I was speaking about surgery strictly for cosmetic purposes, done by

parents who may or may not know all the facts about their child's

condition.

'My daughter thanks me every day for loving her enough to correct a

defect that needed correction.'

I would hope that your daughter never hears you refer to her

condition that way. I have no words to explain how much that would

hurt her definition of self-worth, if she is a young girl.

> Im struggling right now to write this

post with some sort of tact. I

> thought this was a support group for people

with " blepharophimosis "

> but to me it seems like surgery is what is being supported....

>

> I would never dream of having surgery. What would i tell my child,

> when it was born, with eyes like me? How could i justify it, and

tell

> him or her that she is beautiful, except one thing, which surgery

> could " fix " ? How could i make him face the world alone, if i had

went

> through surgery to get 'normal' eyes? The child would come out

with a

> perception innately that something was wrong with him. Why else

would

> mom have changed herself, if there wasnt a problem?

>

> I hear of kids going through 3 or 4 surgeries. I dont know if non

> affected parents have a complete understanding of just

> how...disturbing this is.

>

> In my family, people have had eyes like mine since before my great

> grandmother. I cant imagine what it would be like for two parents

> without the eyes to have a kid with the eyes. They must feel

> estranged, upset, scared, i dont know.

>

> But out of the bottom of my heart i would urge every single parent

> who ever has a child with the eyes to think about what they are

> doing.

>

> I grew up with family, constantly telling me i was beautiful, that

> there was nothing wrong with me and i had as much right to be on

the

> earth as anyone else. I dont know what it would be like to be

alone,

> never seeing a family member with eyes like yours, and then to

have

> your parents show you in the direction of surgery.

>

> My eyes dont give me a huge vision problem, i dont even have ANY

> vision problems. So for an unaffected parent to give their child

> surgery at the age of 3 or 5 or something just really really

upsets

> me. I was taught love and acceptance of peoples differences.

>

> I have been mocked, ridiculed and degraded my entire life by

people

> who dont understand because of my eyes. But at the same time, i

would

> never get surgery to fix my outside appearance. It wont change my

> genes.

>

> Fuck being normal. Seriously. The people who hold my company love

and

> accept me for who I am. Ive waded through the callous assholes,

and

> the friends i have now are true friends. A little bit of extra

skin

> around my eyes doesnt change the way they feel about me. Sometimes

i

> thank god i was born this way. Now i know people love me for me

> instead of strictly my appearance.

>

> This post is huge and rather unorganized...but we aren't diseased,

> people. We have extra skin on our eyelids, and some of us have

vision

> restrictions. We have all of our limbs. We can talk, be

articulate,

> create things...Any time i feel bad about my eyes i just think

about

> people confined to wheel chairs, people who cant take care of

> themselves or who have mental disabilities.

>

> Do people put their children through surgery saying they want to

make

> their children feel better about themselves???

>

> I didnt even know my eyes were any different than anyone elses

till i

> was about 5, and even then it was a tentative understanding that i

> was different.

>

> I think maybe its the parents who feel uncomfortable. Maybe they

want

> to make themselves feel better about the way their child looks,

and

> not vice versa.

>

> Im not trying to attack anyone personally, and if you want to call

me

> an asshole, or hate my words, please feel free. But i will tell

you

> that i live this everyday.

>

> My cousin went to go have corrective surgery on her eyes. The only

> one in our entire family out of three generations. The doctors

messed

> up the operation and now she has limited function of one eye. You

> tell me what is better.

>

> Im really upset about this 'support' group. Im upset that i even

> found it. I thought i would be able to share experiences with

people

> like me. I didnt know that i would find people like me, going

through

> surgery, so they wouldnt be like me.

>

> ---------------------------------

> Be a better sports nut! Let your teams follow you with

Mobile. Try it now.

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

November 19, 2007

I am aware of everything that your email stated.

I am aware of the severity of the issue.

I looked all the photo gallery before i posted, and i have been

researching this my entire life.

Your email oozed spite.

I was referring to COSMETIC SURGERY!!!! For the children who do not

have vision problems.

I appreciate the fact that you think i am ignorant. I guess you are

ill informed about some things as well.

>

> Hi there h,

>

> Tact was never a strong suit of mine either, so here goes.

>

> You did yourself a disservice with this post - this email oozed

ignorance.

> Sit down for an afternoon and research the symptoms of bleph. Make

sure you

> look at a variety of pictures posted of people with the condition.

You will

> notice an important feature that many of the people (most of them

small

> babies) share. They cannot open their eyes. I don't mean that

their eyes

> were small. I'll say it again, as I get the impression clarity is

key here.

> They cannot open their eyes wide enough to see properly.

>

> Now, aside from the obvious, there is a serious issue with having

your

> pupils permanently covered, and it is this. If a number of years

pass and

> your pupils are not exposed to light, you go blind. It is very

important

> that you believe me here h - that is not good. You see, I

am as into

> self acceptance as you are. Like you, I am 3rd generation bleph.

But there

> is a catch here - the condition many of us have makes it impossible

to see

> without surgical treatment. By this I don't mean that people

titter behind

> your back during recess. I mean that some of the kids here would

go blind

> without surgery.

>

> h - the outrage you display, actually, isn't always a bad

thing by

> any means. Your ignorance, unfortunately, is. Get educated about

the

> condition you have, so that you in turn can be of service to those

afflicted

> even more severely than you are.

>

> All the best, Micah

> (3rd generation bleph, and partially blind in my right eye)

>

> blepharophimosis Surgery? Its sickening

>

> Im struggling right now to write this post with some sort of tact.

I

> thought this was a support group for people with " blepharophimosis "

> but to me it seems like surgery is what is being supported....

>

> I would never dream of having surgery. What would i tell my child,

> when it was born, with eyes like me? How could i justify it, and

tell

> him or her that she is beautiful, except one thing, which surgery

> could " fix " ? How could i make him face the world alone, if i had

went

> through surgery to get 'normal' eyes? The child would come out with

a

> perception innately that something was wrong with him. Why else

would

> mom have changed herself, if there wasnt a problem?

>

> I hear of kids going through 3 or 4 surgeries. I dont know if non

> affected parents have a complete understanding of just

> how...disturbing this is.

>

> In my family, people have had eyes like mine since before my great

> grandmother. I cant imagine what it would be like for two parents

> without the eyes to have a kid with the eyes. They must feel

> estranged, upset, scared, i dont know.

>

> But out of the bottom of my heart i would urge every single parent

> who ever has a child with the eyes to think about what they are

> doing.

>

> I grew up with family, constantly telling me i was beautiful, that

> there was nothing wrong with me and i had as much right to be on

the

> earth as anyone else. I dont know what it would be like to be

alone,

> never seeing a family member with eyes like yours, and then to have

> your parents show you in the direction of surgery.

>

> My eyes dont give me a huge vision problem, i dont even have ANY

> vision problems. So for an unaffected parent to give their child

> surgery at the age of 3 or 5 or something just really really upsets

> me. I was taught love and acceptance of peoples differences.

>

> I have been mocked, ridiculed and degraded my entire life by people

> who dont understand because of my eyes. But at the same time, i

would

> never get surgery to fix my outside appearance. It wont change my

> genes.

>

> Fuck being normal. Seriously. The people who hold my company love

and

> accept me for who I am. Ive waded through the callous assholes, and

> the friends i have now are true friends. A little bit of extra skin

> around my eyes doesnt change the way they feel about me. Sometimes

i

> thank god i was born this way. Now i know people love me for me

> instead of strictly my appearance.

>

> This post is huge and rather unorganized...but we aren't diseased,

> people. We have extra skin on our eyelids, and some of us have

vision

> restrictions. We have all of our limbs. We can talk, be articulate,

> create things...Any time i feel bad about my eyes i just think

about

> people confined to wheel chairs, people who cant take care of

> themselves or who have mental disabilities.

>

> Do people put their children through surgery saying they want to

make

> their children feel better about themselves???

>

> I didnt even know my eyes were any different than anyone elses till

i

> was about 5, and even then it was a tentative understanding that i

> was different.

>

> I think maybe its the parents who feel uncomfortable. Maybe they

want

> to make themselves feel better about the way their child looks, and

> not vice versa.

>

> Im not trying to attack anyone personally, and if you want to call

me

> an asshole, or hate my words, please feel free. But i will tell you

> that i live this everyday.

>

> My cousin went to go have corrective surgery on her eyes. The only

> one in our entire family out of three generations. The doctors

messed

> up the operation and now she has limited function of one eye. You

> tell me what is better.

>

> Im really upset about this 'support' group. Im upset that i even

> found it. I thought i would be able to share experiences with

people

> like me. I didnt know that i would find people like me, going

through

> surgery, so they wouldnt be like me.

>

November 19, 2007

And by the way, your subtle sarcasm helps no one.

>

> Hi there h,

>

> Tact was never a strong suit of mine either, so here goes.

>

> You did yourself a disservice with this post - this email oozed

ignorance.

> Sit down for an afternoon and research the symptoms of bleph. Make

sure you

> look at a variety of pictures posted of people with the condition.

You will

> notice an important feature that many of the people (most of them

small

> babies) share. They cannot open their eyes. I don't mean that

their eyes

> were small. I'll say it again, as I get the impression clarity is

key here.

> They cannot open their eyes wide enough to see properly.

>

> Now, aside from the obvious, there is a serious issue with having

your

> pupils permanently covered, and it is this. If a number of years

pass and

> your pupils are not exposed to light, you go blind. It is very

important

> that you believe me here h - that is not good. You see, I

am as into

> self acceptance as you are. Like you, I am 3rd generation bleph.

But there

> is a catch here - the condition many of us have makes it impossible

to see

> without surgical treatment. By this I don't mean that people

titter behind

> your back during recess. I mean that some of the kids here would

go blind

> without surgery.

>

> h - the outrage you display, actually, isn't always a bad

thing by

> any means. Your ignorance, unfortunately, is. Get educated about

the

> condition you have, so that you in turn can be of service to those

afflicted

> even more severely than you are.

>

> All the best, Micah

> (3rd generation bleph, and partially blind in my right eye)

>

> blepharophimosis Surgery? Its sickening

>

> Im struggling right now to write this post with some sort of tact.

I

> thought this was a support group for people with " blepharophimosis "

> but to me it seems like surgery is what is being supported....

>

> I would never dream of having surgery. What would i tell my child,

> when it was born, with eyes like me? How could i justify it, and

tell

> him or her that she is beautiful, except one thing, which surgery

> could " fix " ? How could i make him face the world alone, if i had

went

> through surgery to get 'normal' eyes? The child would come out with

a

> perception innately that something was wrong with him. Why else

would

> mom have changed herself, if there wasnt a problem?

>

> I hear of kids going through 3 or 4 surgeries. I dont know if non

> affected parents have a complete understanding of just

> how...disturbing this is.

>

> In my family, people have had eyes like mine since before my great

> grandmother. I cant imagine what it would be like for two parents

> without the eyes to have a kid with the eyes. They must feel

> estranged, upset, scared, i dont know.

>

> But out of the bottom of my heart i would urge every single parent

> who ever has a child with the eyes to think about what they are

> doing.

>

> I grew up with family, constantly telling me i was beautiful, that

> there was nothing wrong with me and i had as much right to be on

the

> earth as anyone else. I dont know what it would be like to be

alone,

> never seeing a family member with eyes like yours, and then to have

> your parents show you in the direction of surgery.

>

> My eyes dont give me a huge vision problem, i dont even have ANY

> vision problems. So for an unaffected parent to give their child

> surgery at the age of 3 or 5 or something just really really upsets

> me. I was taught love and acceptance of peoples differences.

>

> I have been mocked, ridiculed and degraded my entire life by people

> who dont understand because of my eyes. But at the same time, i

would

> never get surgery to fix my outside appearance. It wont change my

> genes.

>

> Fuck being normal. Seriously. The people who hold my company love

and

> accept me for who I am. Ive waded through the callous assholes, and

> the friends i have now are true friends. A little bit of extra skin

> around my eyes doesnt change the way they feel about me. Sometimes

i

> thank god i was born this way. Now i know people love me for me

> instead of strictly my appearance.

>

> This post is huge and rather unorganized...but we aren't diseased,

> people. We have extra skin on our eyelids, and some of us have

vision

> restrictions. We have all of our limbs. We can talk, be articulate,

> create things...Any time i feel bad about my eyes i just think

about

> people confined to wheel chairs, people who cant take care of

> themselves or who have mental disabilities.

>

> Do people put their children through surgery saying they want to

make

> their children feel better about themselves???

>

> I didnt even know my eyes were any different than anyone elses till

i

> was about 5, and even then it was a tentative understanding that i

> was different.

>

> I think maybe its the parents who feel uncomfortable. Maybe they

want

> to make themselves feel better about the way their child looks, and

> not vice versa.

>

> Im not trying to attack anyone personally, and if you want to call

me

> an asshole, or hate my words, please feel free. But i will tell you

> that i live this everyday.

>

> My cousin went to go have corrective surgery on her eyes. The only

> one in our entire family out of three generations. The doctors

messed

> up the operation and now she has limited function of one eye. You

> tell me what is better.

>

> Im really upset about this 'support' group. Im upset that i even

> found it. I thought i would be able to share experiences with

people

> like me. I didnt know that i would find people like me, going

through

> surgery, so they wouldnt be like me.

>

November 19, 2007

My daughter couldn't open her eyes until she had surgery. She is only

3 and she wears glasses. There is no amount of surgery in the world

that will ever make her eyes normal, and if I could rip my beating

heart out of my body to make her eyes normal you better believe I

would do it.

If you don't need surgery good for you! Count yourselves amongst the

lucky people with bpes who don't.

I see you struggled (and failed) to write with tact

--- In blepharophimosis , " h " <kureeji@...>

wrote:

>

> Im struggling right now to write this post with some sort of tact.

I

> thought this was a support group for people with " blepharophimosis "

> but to me it seems like surgery is what is being supported....

>

> I would never dream of having surgery. What would i tell my child,

> when it was born, with eyes like me? How could i justify it, and

tell

> him or her that she is beautiful, except one thing, which surgery

> could " fix " ? How could i make him face the world alone, if i had

went

> through surgery to get 'normal' eyes? The child would come out with

a

> perception innately that something was wrong with him. Why else

would

> mom have changed herself, if there wasnt a problem?

>

> I hear of kids going through 3 or 4 surgeries. I dont know if non

> affected parents have a complete understanding of just

> how...disturbing this is.

>

> In my family, people have had eyes like mine since before my great

> grandmother. I cant imagine what it would be like for two parents

> without the eyes to have a kid with the eyes. They must feel

> estranged, upset, scared, i dont know.

>

> But out of the bottom of my heart i would urge every single parent

> who ever has a child with the eyes to think about what they are

> doing.

>

> I grew up with family, constantly telling me i was beautiful, that

> there was nothing wrong with me and i had as much right to be on

the

> earth as anyone else. I dont know what it would be like to be

alone,

> never seeing a family member with eyes like yours, and then to have

> your parents show you in the direction of surgery.

>

> My eyes dont give me a huge vision problem, i dont even have ANY

> vision problems. So for an unaffected parent to give their child

> surgery at the age of 3 or 5 or something just really really upsets

> me. I was taught love and acceptance of peoples differences.

>

> I have been mocked, ridiculed and degraded my entire life by people

> who dont understand because of my eyes. But at the same time, i

would

> never get surgery to fix my outside appearance. It wont change my

> genes.

>

> Fuck being normal. Seriously. The people who hold my company love

and

> accept me for who I am. Ive waded through the callous assholes, and

> the friends i have now are true friends. A little bit of extra skin

> around my eyes doesnt change the way they feel about me. Sometimes

i

> thank god i was born this way. Now i know people love me for me

> instead of strictly my appearance.

>

> This post is huge and rather unorganized...but we aren't diseased,

> people. We have extra skin on our eyelids, and some of us have

vision

> restrictions. We have all of our limbs. We can talk, be articulate,

> create things...Any time i feel bad about my eyes i just think

about

> people confined to wheel chairs, people who cant take care of

> themselves or who have mental disabilities.

>

> Do people put their children through surgery saying they want to

make

> their children feel better about themselves???

>

> I didnt even know my eyes were any different than anyone elses till

i

> was about 5, and even then it was a tentative understanding that i

> was different.

>

> I think maybe its the parents who feel uncomfortable. Maybe they

want

> to make themselves feel better about the way their child looks, and

> not vice versa.

>

> Im not trying to attack anyone personally, and if you want to call

me

> an asshole, or hate my words, please feel free. But i will tell you

> that i live this everyday.

>

> My cousin went to go have corrective surgery on her eyes. The only

> one in our entire family out of three generations. The doctors

messed

> up the operation and now she has limited function of one eye. You

> tell me what is better.

>

> Im really upset about this 'support' group. Im upset that i even

> found it. I thought i would be able to share experiences with

people

> like me. I didnt know that i would find people like me, going

through

> surgery, so they wouldnt be like me.

>

November 19, 2007

I have BPES and so does my dad. When my daughter I was born I was

amazed at how did I learn as a child, with such visual impairment, it

still amazes me to this day. Anyone would wonder about the effects on

development

To say that it is better to go through hurt and humiliation, but not

stoop low enough to have a surgical improvement of a medical

condition, makes no sense to me. If my daughter's teeth are crooked I

will get her braces. If she had alopecia I would get her a wig, if

she had bumps on her nose I would get her rhinoplasty, why not? Why

not take advantage of modern medicine. What point are you proving? A

surgery takes a few hours of your life, being teased and constantly

questioned about your looks is far worse. I don't understand why any

parent would choose that for their child...

If you haven't noticed, there are tons of people who are " normal " ,

having loving homes, loving parents, and still have low self esteem.

You seem to think loving your kid is all it takes. It's just a start.

--- In blepharophimosis , Colson <kureeji@...>

wrote:

>

> I understand where you are coming from whole heartedly. I was

referring to surgery strictly for cosmetic purposes, when the child

is too young to be aware of whats happening to them.

>

> I saw a post in another group where a mother who was unaffected had

a child with it. She asked what development problems were associated

with the condition.

>

> It really shook me to the core and scared me, about how uneducated

people are. And the possibility of people like that who are ill

informed, putting their children through surgery, really really

scared me.

>

> My youngest cousin may have to go through surgery, her eyes are

smaller than mine and she has to tilt her head. Im not judging

anyone who goes through surgery to improve their vision. At the same

time, i wonder what unaffected parents see as a vision problem? I had

to tilt my head when i was younger. People still come up to me and

ask me " Can you see? "

>

> I have the same range of vision as anyone else. Most of my family

does, except my youngest cousin, being the only one who may *need*

> surgery.

>

> The only way a parent will know if their child is having a vision

problem is to give it some time. All children with it will tilt their

head. They are short, and paired with the eyes, you get the tilt. But

my mother says that as i grew taller the habit was completely

eliminated.

>

> I can understand how that would scare parents, seeing their

children tilt their head like that. What else can be assumed, but

that there is a vision problem?

>

> My point is the only way a parent will know what the world looks

like through their childrens eyes is to WAIT TILL THEY CAN TELL YOU.

I understand that epiblepharon agitated the situation and i

understand that you wanted the best for her. I understand.

>

> But as a person who has blepharophimosis with no other conditions,

im very lucky that my mother didnt take me to have surgery when i was

young. Even though i tilted my head, and my eyes may seem like i have

a vision problem, i dont. And you know what? Until this group, not

one doctor has ever given me any information about this. Doctors dont

always have the answers, they are just people like me and you.

>

> Psychologically and socially, i have no idea how different my life

would be if i had been operated on at a young age.

>

> Thats where im coming from, and i didnt mean to upset anyone...it

has enriched my life to read everyones stories.

>

> I put a picture of me in the gallery if anyone wants to know what

my eyes look like. I can put up ones of me as a child as well.

>

> blepharophimosis@...: donnat65@...: Mon, 19 Nov 2007 00:38:09

+0000Subject: blepharophimosis Re: Surgery? Its sickening

>

> I can assure you that I did not subject my 22-month-old daughter to

surgery just because I am vain. In fact, I consulted 2 pediatric

ophthalmologists before I decided to go through with it. If your

vision isn't affected by your condition, you are very lucky. My

daughter, on the other hand, was barely able to see at all. She had

to tilt her head so far back in order to see that the doctors worried

that she would have life-long problems with her neck if we waited any

longer. Plus, she had congenital epiblepharon (her bottom lashes

rolled in and rubbed against her eyes). The constant rubbing was

starting to cause scaring on her eyes. Because the surgery was

preformed by an ophthalmic plastic surgeon my insurance company

wouldn't agree to pay for it unless it was determined to

be " medically necessary " . It was. Personally, I loved my

daughter's " little eyes " . See, she was adopted at 19 months old, and

I feel in love with the pictures of those little eyes even before I

met the child. I actually made it a point to take her in and have

professional portraits done before the surgery so that we would

always be able to see the beautiful face she was born with. If the

surgery was purely cosmetic, it would never have happened. My

daughter had surgery to save her sight, not because I was embarrassed

or uncomfortable with her looks. She was, is, and always will be

absolutely beautiful.And surgery or not, my daughter still has

blepharophimosis. Surgery can help her vision, but it is never going

to change her chromosomes. Donna

>

> _________________________________________________________________

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>

November 19, 2007

My dad and I both have arthritis and aggravated scoliosis because of

tiliting our heads, oh but not big deal, right. Maybe it will go away

when I am 50.