College Students/Teens with BPES

[Guest guest]

Hi, my name is and I am 21 years old and I have BPES. My condition is very

extreme. For pictures, look in the album entitled " Kel's Pics " . I was born with

a rare form of blepharophimosis or BPES. This means that I was born with no

eyelids, tear ducts, or skin around my eyes. My doctors at the time, feared for

my corneas which were exposed. However, the delay in surgery damaged my slight

and rendered my one eye uncorrectable. I don't fret about that though, because I

just thank them for eventually performing the surgery that prevented me from

becoming blind. My doctors grafted skin from my shoulders around my eyes.

Anyways, lately I have been getting down about feeling isolated and like a

freak. I have a hard time gaining acceptance from my peers and the isolation is

becoming unbearable. Don't even get me started on the dating scene. I have tried

meeting guys in person and online and no matter which way I go about it, they

all lose interest once my secret comes out or my sunglasses come off.

I was just hopping to maybe find some people my age with BPES to talk to because

I feel so alone with it. I'm the only person in my family who has it. Just me.

[Guest guest]

Dear ,

I'm a father of a son that has BPES and the grandfather of a girl (my son's

daughter) that has BPES as well. So as of the last sentence of your posting

I'm not the person you're looking for. But looking at Kel's pics I see tree

pictures, the latest one of a young woman. Indeed one can see you have BPES.

Yes you're gratefull for the operations that prevented blindness and I think

to understand that part of your e-mail.

I understand your feelings as our son has had the same experiences you have.

He too, on a certain period in his school-life, became isolated but he

fought back in a way that he did not deny having BPES but showing that the

rest of him had no BPES. Sorry... being not native English speaker I find it

difficult to express in proper English what he did and did not do in that

time. The main thing is that he decided te be himself as a person. If no

acceptance from a " peer " so be it. He worked on having friends and school

collegues but not at any price. That resulted in some (good) friends, some

aquaintences and some people one just knows. But... it took time, it gave

disappointments but it worked.

Best regards,

Dolph Heideman

The Netherlands

Sure you have a hard time if your peers don't

blepharophimosis College Students/Teens with BPES

> Hi, my name is and I am 21 years old and I have BPES. My condition

> is very extreme. For pictures, look in the album entitled " Kel's Pics " . I

> was born with a rare form of blepharophimosis or BPES. This means that I

> was born with no eyelids, tear ducts, or skin around my eyes. My doctors

> at the time, feared for my corneas which were exposed. However, the delay

> in surgery damaged my slight and rendered my one eye uncorrectable. I

> don't fret about that though, because I just thank them for eventually

> performing the surgery that prevented me from becoming blind. My doctors

> grafted skin from my shoulders around my eyes.

>

> Anyways, lately I have been getting down about feeling isolated and like a

> freak. I have a hard time gaining acceptance from my peers and the

> isolation is becoming unbearable. Don't even get me started on the dating

> scene. I have tried meeting guys in person and online and no matter which

> way I go about it, they all lose interest once my secret comes out or my

> sunglasses come off.

>

> I was just hopping to maybe find some people my age with BPES to talk to

> because I feel so alone with it. I'm the only person in my family who has

> it. Just me.

>

>

>

>

>

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

>

>

[Guest guest]

,

Sorry, I pushed the sent button to fast. I also wanted to tell you that I

respect and admire the way you put your feelings on E-mail.

Dolph Heideman

--- Original Message -----

From: " A.J. Heideman " <ajheideman@...>

<blepharophimosis >

Sent: Wednesday, November 18, 2009 1:40 AM

Subject: Re: blepharophimosis College Students/Teens with BPES

> Dear ,

> I'm a father of a son that has BPES and the grandfather of a girl (my

> son's daughter) that has BPES as well. So as of the last sentence of your

> posting I'm not the person you're looking for. But looking at Kel's pics

> I see tree pictures, the latest one of a young woman. Indeed one can see

> you have BPES. Yes you're gratefull for the operations that prevented

> blindness and I think to understand that part of your e-mail.

>

> I understand your feelings as our son has had the same experiences you

> have. He too, on a certain period in his school-life, became isolated but

> he fought back in a way that he did not deny having BPES but showing that

> the rest of him had no BPES. Sorry... being not native English speaker I

> find it difficult to express in proper English what he did and did not do

> in that time. The main thing is that he decided te be himself as a person.

> If no acceptance from a " peer " so be it. He worked on having friends and

> school collegues but not at any price. That resulted in some (good)

> friends, some aquaintences and some people one just knows. But... it took

> time, it gave disappointments but it worked.

>

> Best regards,

> Dolph Heideman

> The Netherlands

>

>

>

> Sure you have a hard time if your peers don't

> blepharophimosis College Students/Teens with BPES

>

>

>> Hi, my name is and I am 21 years old and I have BPES. My condition

>> is very extreme. For pictures, look in the album entitled " Kel's Pics " . I

>> was born with a rare form of blepharophimosis or BPES. This means that I

>> was born with no eyelids, tear ducts, or skin around my eyes. My doctors

>> at the time, feared for my corneas which were exposed. However, the delay

>> in surgery damaged my slight and rendered my one eye uncorrectable. I

>> don't fret about that though, because I just thank them for eventually

>> performing the surgery that prevented me from becoming blind. My doctors

>> grafted skin from my shoulders around my eyes.

>>

>> Anyways, lately I have been getting down about feeling isolated and like

>> a freak. I have a hard time gaining acceptance from my peers and the

>> isolation is becoming unbearable. Don't even get me started on the dating

>> scene. I have tried meeting guys in person and online and no matter which

>> way I go about it, they all lose interest once my secret comes out or my

>> sunglasses come off.

>>

>> I was just hopping to maybe find some people my age with BPES to talk to

>> because I feel so alone with it. I'm the only person in my family who has

>> it. Just me.

>>

>>

>>

>>

>>

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

>>

>>

[Guest guest]

Hi ,

I find a beautiful young lady at Kel's pics.

Pinar(Turkey-Istanbul)

From: kellbell52388 <kjk6126@...>blepharophimosis Sent: Wed, November 18, 2009 12:00:03 AMSubject: blepharophimosis College Students/Teens with BPES

Hi, my name is and I am 21 years old and I have BPES. My condition is very extreme. For pictures, look in the album entitled "Kel's Pics". I was born with a rare form of blepharophimosis or BPES. This means that I was born with no eyelids, tear ducts, or skin around my eyes. My doctors at the time, feared for my corneas which were exposed. However, the delay in surgery damaged my slight and rendered my one eye uncorrectable. I don't fret about that though, because I just thank them for eventually performing the surgery that prevented me from becoming blind. My doctors grafted skin from my shoulders around my eyes.Anyways, lately I have been getting down about feeling isolated and like a freak. I have a hard time gaining acceptance from my peers and the isolation is becoming unbearable. Don't even get me started on the dating scene. I have tried meeting guys in person and online and no matter which way I go about it, they all lose

interest once my secret comes out or my sunglasses come off.I was just hopping to maybe find some people my age with BPES to talk to because I feel so alone with it. I'm the only person in my family who has it. Just me.

[Guest guest]

Hey ,

Sorry you are feeling down! BPES does make us different, but I don't think it's

different in a bad way. When it comes down to it, we have smaller eyes than

average, and I'm thankful that it isn't anything worse.

My experience's have been similar to you, I know what you mean about people

wondering what is wrong, and especially meeting people for the first time and

knowing they are staring at your eyes.

But I learned at an early age to be confident in who I am, and not let anyone's

opinion effect me. Besides I know when people come to know me, all of a sudden,

it's like my eyes are a non issue. Be confident in yourself, and others will be

too.

One thing I have do is wear out a pair of " cool " glasses. It use to make me

more confident in my self image, but not I just kind wear them out cause I think

they look cool. Strangely I have 20/20 vision.

But anyway I am 23, and just graduated college in 09. I am the only one in my

family with BPES, but have had a lot of support growing up.

Feel free to email me, or friend me on facebook!

-Joe Breed

>

> Hi, my name is and I am 21 years old and I have BPES. My condition is

very extreme. For pictures, look in the album entitled " Kel's Pics " . I was born

with a rare form of blepharophimosis or BPES. This means that I was born with no

eyelids, tear ducts, or skin around my eyes. My doctors at the time, feared for

my corneas which were exposed. However, the delay in surgery damaged my slight

and rendered my one eye uncorrectable. I don't fret about that though, because I

just thank them for eventually performing the surgery that prevented me from

becoming blind. My doctors grafted skin from my shoulders around my eyes.

>

> Anyways, lately I have been getting down about feeling isolated and like a

freak. I have a hard time gaining acceptance from my peers and the isolation is

becoming unbearable. Don't even get me started on the dating scene. I have tried

meeting guys in person and online and no matter which way I go about it, they

all lose interest once my secret comes out or my sunglasses come off.

>

> I was just hopping to maybe find some people my age with BPES to talk to

because I feel so alone with it. I'm the only person in my family who has it.

Just me.

>

[Guest guest]

Hi , My name is and I also have BPES. I'm 35 and only found out

today what it was actually called, then found and joined this group. I just

checked out your pics and you are BEAUTIFULL! You look so much like me! (not

that I'm not modest or anything ) It is so amazing to join this group and see

so many people who look like us. I too am the only one in my family with BPES.

School was often rough... people can be sooooo cruel (even till today... PM me &

I'll share my most recent story of of despicable people and how I dealt with

it). I never had a problem having friends both girls and boys... but often

experienced the " boyfriend " problem. After years of my friends dating I finally

got the courage to swallow my pride and ask out the boys who I had the crush

on... just one rejection after the other. I even got replies like " ewwwwwww no

way you've got chinese eyes! " I really never understood that one because I

thought it was kind of cool that I had " chinese eyes " ). Anyway... I just wanted

to say... hang in there... It's when you stop trying and exude happiness they

come around. I soon found... happy people are magnets! My first boyfriend I was

17 it was a puppy love thing in HS not very serious... my first serious BF I was

19. Then... at 32 thinking I was destined for a life of the " crazy cat lady " ...

I'm finally married... He's young, he's smart and he's HOT... Check out my

pics... This too will come to you!!!!!!!!!!!! I know it's easier said than done

but just be confident that all the good things will happen for you... All my

best,

>

> Hi, my name is and I am 21 years old and I have BPES. My condition is

very extreme. For pictures, look in the album entitled " Kel's Pics " . I was born

with a rare form of blepharophimosis or BPES. This means that I was born with no

eyelids, tear ducts, or skin around my eyes. My doctors at the time, feared for

my corneas which were exposed. However, the delay in surgery damaged my slight

and rendered my one eye uncorrectable. I don't fret about that though, because I

just thank them for eventually performing the surgery that prevented me from

becoming blind. My doctors grafted skin from my shoulders around my eyes.

>

> Anyways, lately I have been getting down about feeling isolated and like a

freak. I have a hard time gaining acceptance from my peers and the isolation is

becoming unbearable. Don't even get me started on the dating scene. I have tried

meeting guys in person and online and no matter which way I go about it, they

all lose interest once my secret comes out or my sunglasses come off.

>

> I was just hopping to maybe find some people my age with BPES to talk to

because I feel so alone with it. I'm the only person in my family who has it.

Just me.

>

[Guest guest]

Hi ,

I think you are awesome for the way you handled those situations. I can only

wish that I had that same confidence as you growing up and going through

grade/high school. Sorry, my name is Tameria from Arizona, I am a 23 year old

female that is the only one in my family that has BPES too and I just found out

the name of our " condition " (and this site) about a year and a half ago. I can

understand completely about the way you are feeling (well, yea right? I'm only 2

years older than you, haha). I felt `out of place' growing up too; I am full

blooded Native American, and grew up in a small community where everyone was

surround by other natives until we started to expand our schools, but up until

then, I was the only one who was different. On some of my bad days at school, I

was always convinced that I was adopted and my dad would tried to comfort me by

saying that he small eyes too. Now that I've found this site, I have found a

little more comfort knowing that I am not the only one. Yes, people can be rude

and terrible and anything else in the book, but we're still here…it only makes

us stronger and it helps build us up. Honestly, if it weren't for them type of

people, I'd still be a shy person and living at home, but now I am spending my

time in the military, traveling and meeting new (and more accepting) people. I

am happily married and my husband is fine with my condition; that's what made me

love him even more.

Oh, and about the whole " chinese eyes " thing…I've been there too and I just keep

telling myself that chinese people are beautiful. I'm proud to say that I look

Asian, I just correct people now. In fact, my husband is Pacific Islander, so if

we meet new people, they just automatically think we're both from the island….by

the way, I've lived in Hawaii and it was great! I felt like I belonged, like I

fit in there. There are so many Asian looking people there, that no one cared!

I'm not saying `go there', but that is what lifted my spirits and made me live

my life not carrying what other people thought. But anywho, I don't have very

many pictures here on this site, but if you want, you can look me up on MySpace

or Facebook.

Sincerely,

Tameria Tom

>

> Hi, my name is and I am 21 years old and I have BPES. My condition is

very extreme. For pictures, look in the album entitled " Kel's Pics " . I was born

with a rare form of blepharophimosis or BPES. This means that I was born with no

eyelids, tear ducts, or skin around my eyes. My doctors at the time, feared for

my corneas which were exposed. However, the delay in surgery damaged my slight

and rendered my one eye uncorrectable. I don't fret about that though, because I

just thank them for eventually performing the surgery that prevented me from

becoming blind. My doctors grafted skin from my shoulders around my eyes.

>

> Anyways, lately I have been getting down about feeling isolated and like a

freak. I have a hard time gaining acceptance from my peers and the isolation is

becoming unbearable. Don't even get me started on the dating scene. I have tried

meeting guys in person and online and no matter which way I go about it, they

all lose interest once my secret comes out or my sunglasses come off.

>

> I was just hopping to maybe find some people my age with BPES to talk to

because I feel so alone with it. I'm the only person in my family who has it.

Just me.

>

[Guest guest]

,

My daughter has BPES...she is 6 years old and is the only one in the family. I don't know what the future holds. I do get the stares already but I tell myself "thank goodness it's only BPES". I want to give you advice that I plan to give to my daughter when the time comes...that is, "We hold the key to our happiness. You can make hell out of heaven or heaven out of hell". I know it must be hard many of times but try to keep your head up and focus on those things that are good in life and leave out and ignore anything bad.

Chin up

From: kellbell52388 <kjk6126@...>blepharophimosis Sent: Tue, November 17, 2009 5:00:03 PMSubject: blepharophimosis College Students/Teens with BPES

Hi, my name is and I am 21 years old and I have BPES. My condition is very extreme. For pictures, look in the album entitled "Kel's Pics". I was born with a rare form of blepharophimosis or BPES. This means that I was born with no eyelids, tear ducts, or skin around my eyes. My doctors at the time, feared for my corneas which were exposed. However, the delay in surgery damaged my slight and rendered my one eye uncorrectable. I don't fret about that though, because I just thank them for eventually performing the surgery that prevented me from becoming blind. My doctors grafted skin from my shoulders around my eyes.Anyways, lately I have been getting down about feeling isolated and like a freak. I have a hard time gaining acceptance from my peers and the isolation is becoming unbearable. Don't even get me started on the dating scene. I have tried meeting guys in person and online and no matter which way I go about it, they all lose

interest once my secret comes out or my sunglasses come off.I was just hopping to maybe find some people my age with BPES to talk to because I feel so alone with it. I'm the only person in my family who has it. Just me.

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