Just a thought about my Blepharophimosis.

[Guest guest]

I was born with Blepharophimosis and I have read here that some

people say it is only a cosmetic defect. Maybe for some but not for

me and I'm sure not for all of us who have it. First of all I was

born completely missing my muscles and tendons so my eyelids did not

open at all!! I was also missing the bridge to my nose. Also due

to my eyelids being completely closed for so long I suffered damage

to my eyes and was totally blind until 7 yrs old and legally blind

until 17. I also had some heart issues that were related to the

Blepharophimosis and also joint issuse in my feet, knees, hips and

back. These joint issues give me a good deal of pain. The most

painful thing was when my husband and I realized that I had POF

(Premature Ovarian Failure) due to the Blepharophimosis. I gave up

trying to become pregnant and adopted and I wouldn't have changed a

thing because my children are so wonderful. I now know it was a

blessing that I was choosen to adopt them. And also people are more

educuated today and so are kids. I'm sure that children still make

fun of kids a whole lot but when I was a child I actually thought

about suicide every single day because of the treatment I recieved

due to the way my eyes and vision were. I was just tormented by the

other kids and when either I or my mother would speak up about it to

the school or parents I/ we were told that I was too sensitive or

that it just wasn't simply happening. I suffered unbelievablely due

to having this. I again would not change things being given the

oppurtunity though. I feel in the end it has made me a much

stronger and more tolerant person.

[Guest guest]

very touched.... thanks for being here ..... im also on myspace anytime you wanna talk~http://www.myspace.com/dawnmarie2my daugthers pics are on TAILYNNmrslittleeyes <mrslittleeyes@...> wrote: I was born with Blepharophimosis and I have read here that some people say it is only a cosmetic defect. Maybe for some but not for me and I'm sure not for all of us who have it. First of all I was born completely missing my muscles and tendons so my eyelids did not open at all!! I was

also missing the bridge to my nose. Also due to my eyelids being completely closed for so long I suffered damage to my eyes and was totally blind until 7 yrs old and legally blind until 17. I also had some heart issues that were related to the Blepharophimosis and also joint issuse in my feet, knees, hips and back. These joint issues give me a good deal of pain. The most painful thing was when my husband and I realized that I had POF (Premature Ovarian Failure) due to the Blepharophimosis. I gave up trying to become pregnant and adopted and I wouldn't have changed a thing because my children are so wonderful. I now know it was a blessing that I was choosen to adopt them. And also people are more educuated today and so are kids. I'm sure that children still make fun of kids a whole lot but when I was a child I actually thought about suicide every single day because of the treatment I recieved due to the way my eyes and

vision were. I was just tormented by the other kids and when either I or my mother would speak up about it to the school or parents I/ we were told that I was too sensitive or that it just wasn't simply happening. I suffered unbelievablely due to having this. I again would not change things being given the oppurtunity though. I feel in the end it has made me a much stronger and more tolerant person.

TV dinner still cooling?Check out "Tonight's Picks" on TV.

[Guest guest]

Thank you so much for sharing your stories. AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

,

I, too, have found Bleph to be much more than a cosmetic disorder.

Obviously, my appearance has been important to me, but so much more of

my life has been affected by this disease. Most importantly, the

trauma that I suffered from having painful surgeries as a baby left me

with permanent emotional disorders ranging from severe anxiety

disorder to severe depression. I had night terrors until I was about

15 about the " men with no mouths " (doctors) and I would dream about

seafoam-green tiled operating rooms and scalpels. I also was a teen

who contemplated suicide and often injured myself because my whole

sense of identity and beauty was completely altered. I'm not

completely sure what kinds of surgeries I had or what condition I was

in when I was born, but I too had the surgery where part of my leg

muscles were put into my eyelids, and I'm pretty sure it didn't work.

My eyes are literally sewn open, and I can't close them, and I never

will unless I get more surgeries that will potentially drastically

affect my appearance. My eyes hurt every day because of this, I can't

sleep well because they hurt so much, I can't drive cars for more than

a few minutes before the wind or heat dries my eyes out, I can't go

walking on a windy day, I can't kiss boys without wondering if they're

looking at me, and I can barely discuss all of this without crying...

And most of this really wasn't a problem until my teenage years. As a

kid, I was fine. And after learning that I might end up with POF, my

life is even more different. I'm 23 years old and I don't have a

husband or a boyfriend to even try to have a baby with while I still

have a chance, and I just don't know what to do (but I do have an

appointment to get some testing done in a couple of weeks to find out

what my situation is). I'm actually more interested in adopting

children than I am having my own, but knowing that I'll never have the

choice is hard for me. I'm sorry that your life has been so affected

by Bleph, but thank you for sharing your story because my life also

has been very hard. But like you said, I have become more tolerant,

compassionate, and I think well-rounded because of this disease. I

hope we can talk more in the future.

Sydney

Upstate NY

>

> I was born with Blepharophimosis and I have read here that some

> people say it is only a cosmetic defect. Maybe for some but not for

> me and I'm sure not for all of us who have it. First of all I was

> born completely missing my muscles and tendons so my eyelids did not

> open at all!! I was also missing the bridge to my nose. Also due

> to my eyelids being completely closed for so long I suffered damage

> to my eyes and was totally blind until 7 yrs old and legally blind

> until 17. I also had some heart issues that were related to the

> Blepharophimosis and also joint issuse in my feet, knees, hips and

> back. These joint issues give me a good deal of pain. The most

> painful thing was when my husband and I realized that I had POF

> (Premature Ovarian Failure) due to the Blepharophimosis. I gave up

> trying to become pregnant and adopted and I wouldn't have changed a

> thing because my children are so wonderful. I now know it was a

> blessing that I was choosen to adopt them. And also people are more

> educuated today and so are kids. I'm sure that children still make

> fun of kids a whole lot but when I was a child I actually thought

> about suicide every single day because of the treatment I recieved

> due to the way my eyes and vision were. I was just tormented by the

> other kids and when either I or my mother would speak up about it to

> the school or parents I/ we were told that I was too sensitive or

> that it just wasn't simply happening. I suffered unbelievablely due

> to having this. I again would not change things being given the

> oppurtunity though. I feel in the end it has made me a much

> stronger and more tolerant person.

>

[Guest guest]

Hey Sydney, My friend just had a baby 2 days ago and named her Sydney. But anyways thanks for writing. I was really mad yesterday when I read somewhere on there where someone had said "let's not forget it is purely a cosmetic defect". That is why I wrote what I wrote. My life has been so rough because of it. I really did think about suicide constanty from about ages 10-20. I was too chicken to do anything but shoot myself and so I thank God now that my family did not have a gun in my house because I know that I would have done it. The only source of comfort I had was my mother. She gave up everything for me. She suffered through every surgery with me and held me close and comforted me when I was hurting whether it be from the pain I was in or from the torment I endured at school. She wrote that poem when I was like 2 years old and she would always read it to me and it too gave me

hope. I have an appointment today to find out the results of a CT Scan I had done. I may end up having to have surgery on my nose/ sinus. The guy who did the CT Scan showed it to me and I could see where there is wire between my eyes. I also have had my eyelids folded back onto themselves and then sewn up to hold them open. I am not able to close my eyes in the traditional way (eyelids coming down) but what I am able to do is have my checks go up to meet my eyelids and I am able to close them this way. However, this causes stress in all of the muscles so I can't do it for too long. I end up getting very painful muscle aches from doing it. I sometimes wear an eye patch when my muscles are strainned too much to help rest my eye and eliviate the pain. I also wear a eye mask to sleep 'cause I have trouble falling asleep because I can't close my eyes and it is just too bright to go to sleep. I also get lots of eye

infections and my tear ducts don't work right either so my eyes sometimes water uncontrollably and run down my face. People always wan't to know why I don't wear make-up and that's a big part of it. First of all I don't really have much eyelid left to speak of so eye shaddow is kinda out. Any other make-up is just messed up when my tears run down my face. God, I would so love to talk to you in person. It is so nice to finally find people who know what I've ben through and can just relate. Talk to you again soon, I don't know if you have a myspace account but my myspace is www.myspace.com/love2adopt and my primary e-mail is love2adopt@... I don't know if you read it or not but I do have POF and so I adopted. I had a very emotional

night last night after finding this group. It brought up a lot of painful memories that I had buried away. It also made me realize just how much I had missed out on in life. I never had a boyfriend or many girl friends either because no one wanted to be friends with the "freak" so ya know I never got to go to my prom or any other school function. I remember on prom night I just sat home and cried. Such a hard life we have had. I'm still infuriated at that person who said it was just cosmeti. Well I've got to go now 'casue now I'm crying again. tragedymae <xmissvixenx@...> wrote: ,I, too, have found Bleph to be much more than a cosmetic disorder.Obviously, my appearance has been important to me, but so much more ofmy life has been affected by this disease. Most importantly, thetrauma that I suffered from having painful surgeries as a baby left mewith permanent emotional disorders ranging from severe anxietydisorder to severe depression. I had night terrors until I was about15 about the "men with no mouths" (doctors) and I would dream aboutseafoam-green tiled operating rooms and scalpels. I also was a teenwho contemplated suicide and often injured myself because my wholesense of identity and beauty was completely altered. I'm notcompletely sure what kinds of surgeries I had or what condition I wasin when I was born, but I too had the

surgery where part of my legmuscles were put into my eyelids, and I'm pretty sure it didn't work.My eyes are literally sewn open, and I can't close them, and I neverwill unless I get more surgeries that will potentially drasticallyaffect my appearance. My eyes hurt every day because of this, I can'tsleep well because they hurt so much, I can't drive cars for more thana few minutes before the wind or heat dries my eyes out, I can't gowalking on a windy day, I can't kiss boys without wondering if they'relooking at me, and I can barely discuss all of this without crying...And most of this really wasn't a problem until my teenage years. As akid, I was fine. And after learning that I might end up with POF, mylife is even more different. I'm 23 years old and I don't have ahusband or a boyfriend to even try to have a baby with while I stillhave a chance, and I just don't know what to do (but I do have anappointment to get

some testing done in a couple of weeks to find outwhat my situation is). I'm actually more interested in adoptingchildren than I am having my own, but knowing that I'll never have thechoice is hard for me. I'm sorry that your life has been so affectedby Bleph, but thank you for sharing your story because my life alsohas been very hard. But like you said, I have become more tolerant,compassionate, and I think well-rounded because of this disease. Ihope we can talk more in the future.SydneyUpstate NY>> I was born with Blepharophimosis and I have read here that some > people say it is only a cosmetic defect. Maybe for some but not for > me and I'm sure not for all of us who have it. First of all I was > born completely missing my

muscles and tendons so my eyelids did not > open at all!! I was also missing the bridge to my nose. Also due > to my eyelids being completely closed for so long I suffered damage > to my eyes and was totally blind until 7 yrs old and legally blind > until 17. I also had some heart issues that were related to the > Blepharophimosis and also joint issuse in my feet, knees, hips and > back. These joint issues give me a good deal of pain. The most > painful thing was when my husband and I realized that I had POF > (Premature Ovarian Failure) due to the Blepharophimosis. I gave up > trying to become pregnant and adopted and I wouldn't have changed a > thing because my children are so wonderful. I now know it was a > blessing that I was choosen to adopt them. And also people are more > educuated today and so are kids. I'm sure that children still make > fun of kids a whole lot but when I

was a child I actually thought > about suicide every single day because of the treatment I recieved > due to the way my eyes and vision were. I was just tormented by the > other kids and when either I or my mother would speak up about it to > the school or parents I/ we were told that I was too sensitive or > that it just wasn't simply happening. I suffered unbelievablely due > to having this. I again would not change things being given the > oppurtunity though. I feel in the end it has made me a much > stronger and more tolerant person.>

Check out the all-new beta - Fire up a more powerful email and get things done faster.

[Guest guest]

Thank you and Sydney for writing such heart felt examples of

what you went through as teens. This helps me to understand my

daughter a little better and what she might be going through. My

daughter also suffers from severe anxiety and social anxiety. It has

gotten worse as she has gotten older. She no longer wants to sleep

at her grandparents or to go camping because she is afraid. I try to

understand why she doesn't want to do these things and it is hard

sometimes. I sometimes push her to but I only do it in hopes that

she will see everything is OK. A psychiatric nurse practitioner

thinks she might also have PTSD (Post Traumatic Stress Disorder).

Hannah has a stomache ache every night before she goes to bed because

I think she might also have night terrors or that she is anxious

about school the next day. She is never able to explain these upset

stomaches. Over school vacations she is fine no complaints what so

ever. I have her in counseling and also at school I am in contact

with the guidance counselor and her teachers in regards to how she is

feeling. I am just hoping with all the support that I give her that

she doesn't feel the need to hurt herself. Someone has described her

as being an " old soul " . I think any disability is a struggle. To

try and fit in is hard enough but to fit in with some type of

disability is even more difficult.

Sydney I know you live in New York and I think it would be great to

have a get together with the people on the east coast or even in the

US let me know and I will figure something out.

Thank you two so much for sharing

in New Hampshire

> >

> > I was born with Blepharophimosis and I have read here that some

> > people say it is only a cosmetic defect. Maybe for some but not

for

> > me and I'm sure not for all of us who have it. First of all I

was

> > born completely missing my muscles and tendons so my eyelids did

not

> > open at all!! I was also missing the bridge to my nose. Also

due

> > to my eyelids being completely closed for so long I suffered

damage

> > to my eyes and was totally blind until 7 yrs old and legally

blind

> > until 17. I also had some heart issues that were related to the

> > Blepharophimosis and also joint issuse in my feet, knees, hips

and

> > back. These joint issues give me a good deal of pain. The most

> > painful thing was when my husband and I realized that I had POF

> > (Premature Ovarian Failure) due to the Blepharophimosis. I gave

up

> > trying to become pregnant and adopted and I wouldn't have changed

a

> > thing because my children are so wonderful. I now know it was a

> > blessing that I was choosen to adopt them. And also people are

more

> > educuated today and so are kids. I'm sure that children still

make

> > fun of kids a whole lot but when I was a child I actually thought

> > about suicide every single day because of the treatment I

recieved

> > due to the way my eyes and vision were. I was just tormented by

the

> > other kids and when either I or my mother would speak up about it

to

> > the school or parents I/ we were told that I was too sensitive or

> > that it just wasn't simply happening. I suffered unbelievablely

due

> > to having this. I again would not change things being given the

> > oppurtunity though. I feel in the end it has made me a much

> > stronger and more tolerant person.

> >

>

[Guest guest]

I would love someday to meet all of you. It would be wonderful for us all to see each other. I think it would be great too for anyone who has teen children to see that you can live a happy and productive life with BPES. I live in Washington State right now but am moving back to the East Coast in May. My dad who has BPES also lives in New Hampshire. Pleaase let try and set up a meeting sometime this year.chrissyj30 <c.jameson@...> wrote: Thank you and Sydney for writing such heart felt

examples of what you went through as teens. This helps me to understand my daughter a little better and what she might be going through. My daughter also suffers from severe anxiety and social anxiety. It has gotten worse as she has gotten older. She no longer wants to sleep at her grandparents or to go camping because she is afraid. I try to understand why she doesn't want to do these things and it is hard sometimes. I sometimes push her to but I only do it in hopes that she will see everything is OK. A psychiatric nurse practitioner thinks she might also have PTSD (Post Traumatic Stress Disorder). Hannah has a stomache ache every night before she goes to bed because I think she might also have night terrors or that she is anxious about school the next day. She is never able to explain these upset stomaches. Over school vacations she is fine no complaints what so ever. I have her in counseling and also at school I am

in contact with the guidance counselor and her teachers in regards to how she is feeling. I am just hoping with all the support that I give her that she doesn't feel the need to hurt herself. Someone has described her as being an "old soul". I think any disability is a struggle. To try and fit in is hard enough but to fit in with some type of disability is even more difficult. Sydney I know you live in New York and I think it would be great to have a get together with the people on the east coast or even in the US let me know and I will figure something out.Thank you two so much for sharing in New Hampshire> >> > I was born with Blepharophimosis and I have read here that some > > people say it is only a cosmetic defect. Maybe for some but not for > > me and I'm sure not for all of us who have it. First of all I was > > born completely missing my muscles and tendons

so my eyelids did not > > open at all!! I was also missing the bridge to my nose. Also due > > to my eyelids being completely closed for so long I suffered damage > > to my eyes and was totally blind until 7 yrs old and legally blind > > until 17. I also had some heart issues that were related to the > > Blepharophimosis and also joint issuse in my feet, knees, hips and > > back. These joint issues give me a good deal of pain. The most > > painful thing was when my husband and I realized that I had POF > > (Premature Ovarian Failure) due to the Blepharophimosis. I gave up > > trying to become pregnant and adopted and I wouldn't have changed a > > thing because my children are so wonderful. I now know it was a > > blessing that I was choosen to adopt them. And also people are more > > educuated today and so are kids. I'm

sure that children still make > > fun of kids a whole lot but when I was a child I actually thought > > about suicide every single day because of the treatment I recieved > > due to the way my eyes and vision were. I was just tormented by the > > other kids and when either I or my mother would speak up about it to > > the school or parents I/ we were told that I was too sensitive or > > that it just wasn't simply happening. I suffered unbelievablely due > > to having this. I again would not change things being given the > > oppurtunity though. I feel in the end it has made me a much > > stronger and more tolerant person.> >>

Have a burning question? Go to Answers and get answers from real people who know.

[Guest guest]

I would love to meet up with you guys. I live in Washinton State

now but am moving to Florida in May. My dad who also has BPES lives

in New Hampshire and my mom lives in Maine so I am gonna be up that

way from time to time. Please keep me posted on a get together. I

think it would be good too for teens with BPES to see that you can

live a happy and productive life with BPES.

I also wanted to say that I have had all of these things described

below. For years and years I would get physically sick when I had

to go to school or to the doctor or anywhere I didn't feel

comfortable. One thing that I came to realize that makes me like

this (other than kids making fun of me for my entire school career)

is the fact that my vision is so poor that it is hard to go

somewhere and have people expect you to see like they do. Like I

can't see clocks and signs. So sometimes I will not see something

that everyone else can see and then I miss it or do

something " wrong " and then everyone treats me like I am mentally

defficient. I want to shout at them " I'm not stupid I'm hard of

sight " I often just tell people now that I am legally blind (I am

withought my glasses, so it's partly true). I even to this day

don't want to go places by myself because of this fear and it

becomes an anxiety problem. Also another thing is that I am afraid

to talk to people I don't know well because I feel like they are

just staring at my eyes. I often have people ask me why I'm not

looking at them? My left eye I really have no control over and it

just wanders about on its own. This makes me very uncomfortable.

People stop me in mid-sentence and ask if I am part Asian? What has

happened to your eyes? You have scars on your face? It does happen

less as an adult but it still happens. I often have children ask me

about my eyes. If they are old enough to understand I tell them the

truth and sometimes they will make fun of me right to my face. I'm

an adult this isn't suppose to happen to me. I have learned to

speak up for myself now a bit but it is very, very hard to do so.

If a child makes fun of me now I will tell them that it is not nice

to do so and ask them if they would like it if I made fun of them?

It doesn't seem like such a big thing to say to them but it often

works. They are shocked that I even said anything to them in the

first place and then it gets them thinking really how they would

feel if it were them being the punt of the joke. If they are very

little then I just tell them that is the way God made my eyes.

Oh, I have so much to write that I thin will help the people on here

with children who have BPES. I have already mentioned to a few

about POF associated with BPES Type 1. Make sure that you keep up

with it and find out as soon as possible if your girl child has

this. Because I have not had good medical info on this until like

jsut yesterday when I found this site I have had no estrogen in my

body for way too many years. I now have Osteoporosis. You would

think that it is a disease of an older woman but because we go

through Menopause so early we essentially have the hormore levels of

a 50-60 year old women and our bones will suffer. I currently take

a dail dose of estrogen to keep my bones healthy and also to help

with other things associated with Menopause. Look up menapause and

learn all of what goes on with your body because I have suffered

through all of them for years until finally being diagnosised with

POF. There are lots of problems.

Anyways I'll write more as I think of it. My hands are tired from

typing now.

Good night all.

> > >

> > > I was born with Blepharophimosis and I have read here that

some

> > > people say it is only a cosmetic defect. Maybe for some but

not

> for

> > > me and I'm sure not for all of us who have it. First of all I

> was

> > > born completely missing my muscles and tendons so my eyelids

did

> not

> > > open at all!! I was also missing the bridge to my nose. Also

> due

> > > to my eyelids being completely closed for so long I suffered

> damage

> > > to my eyes and was totally blind until 7 yrs old and legally

> blind

> > > until 17. I also had some heart issues that were related to

the

> > > Blepharophimosis and also joint issuse in my feet, knees, hips

> and

> > > back. These joint issues give me a good deal of pain. The

most

> > > painful thing was when my husband and I realized that I had

POF

> > > (Premature Ovarian Failure) due to the Blepharophimosis. I

gave

> up

> > > trying to become pregnant and adopted and I wouldn't have

changed

> a

> > > thing because my children are so wonderful. I now know it was

a

> > > blessing that I was choosen to adopt them. And also people

are

> more

> > > educuated today and so are kids. I'm sure that children still

> make

> > > fun of kids a whole lot but when I was a child I actually

thought

> > > about suicide every single day because of the treatment I

> recieved

> > > due to the way my eyes and vision were. I was just tormented

by

> the

> > > other kids and when either I or my mother would speak up about

it

> to

> > > the school or parents I/ we were told that I was too sensitive

or

> > > that it just wasn't simply happening. I suffered

unbelievablely

> due

> > > to having this. I again would not change things being given

the

> > > oppurtunity though. I feel in the end it has made me a much

> > > stronger and more tolerant person.

> > >

> >

>

[Guest guest]

, I would love to meet your daughter, and I'm sure my mother

would love to meet you. She has been my rock, my support, through all

of this. She helped pay for the three-day venture to Boston, even

though the results might have been (and very much were) negative. We

were very very very poor when I was a baby and she and my father

managed still to get the surgeries that I needed in the 80s. My mom is

willing to go anywhere with me to try ANY option to make my life

better, and without her, I don't think I'd even be alive today. She

helped me survive EVERYTHING. She still tells me that when I was a

kid, I used to say that I had stomache aches before school every

single day, and the truth was that I did - but I think now that it was

nerves, not just my ill stomach. I still get nervous going into any

new situation. The only time I feel comfortable is with my closest

friends. All through my college career, and even in work now, any new

meeting or class scares me; I'm afraid of talking in front of people

or having them look at me. I so sincerely appreciate your

understanding of this, even though it is not you that's feeling it,

you seem to truly understand your daughter's feelings... it makes me

feel so much better knowing I'm not the only one that ever felt this.

I don't want to sound like I'm happy that other people have had to go

through this struggle, but just to know that there are people out

there, whatever age, that have felt the pain of this disease... it

makes it just that much more manageable. I think it would be wonderful

if we at least could set up a meeting. I live in Plattsburgh New York,

just over the lake from Burlington, Vermont. I've never met anyone my

age with Bleph, and I know your daughter is quite a bit younger, but

if I could even help her in any way, it would be that much of a help

to me. Having Bleph is a daily struggle for me. Oddly, the only time I

have relief from the pain is when I cry, and most of my crying is

because I have Bleph. Often, when I express this, people think it's a

funny irony... but even typing all of this brings tears to my eyes and

relieves the dry pain I've had for three days now in my right eye. It

sounds stupid, it sounds silly to me, but that's just how it is...

Anyhow, it's late and I really should get to bed, but thank you again

for telling me about your daughter. I wish that I had had this kind of

support or even recognition of my disease when I was 13, but that was

so long ago that we still knew almost nothing... , if there

is anything I can do to help your daughter, please let me know. And

thank you again, , for telling me about yourself. I know that

most of the people in this chat group are parents of young children,

so it's a comfort to find anyone of a similar age to me, and to be

able to talk about what it's like to have Blepharophimosis. Thank you

so much, all of you. It really has been a gift to find you.

Sydney

> > >

> > > I was born with Blepharophimosis and I have read here that some

> > > people say it is only a cosmetic defect. Maybe for some but not

> for

> > > me and I'm sure not for all of us who have it. First of all I

> was

> > > born completely missing my muscles and tendons so my eyelids did

> not

> > > open at all!! I was also missing the bridge to my nose. Also

> due

> > > to my eyelids being completely closed for so long I suffered

> damage

> > > to my eyes and was totally blind until 7 yrs old and legally

> blind

> > > until 17. I also had some heart issues that were related to the

> > > Blepharophimosis and also joint issuse in my feet, knees, hips

> and

> > > back. These joint issues give me a good deal of pain. The most

> > > painful thing was when my husband and I realized that I had POF

> > > (Premature Ovarian Failure) due to the Blepharophimosis. I gave

> up

> > > trying to become pregnant and adopted and I wouldn't have changed

> a

> > > thing because my children are so wonderful. I now know it was a

> > > blessing that I was choosen to adopt them. And also people are

> more

> > > educuated today and so are kids. I'm sure that children still

> make

> > > fun of kids a whole lot but when I was a child I actually thought

> > > about suicide every single day because of the treatment I

> recieved

> > > due to the way my eyes and vision were. I was just tormented by

> the

> > > other kids and when either I or my mother would speak up about it

> to

> > > the school or parents I/ we were told that I was too sensitive or

> > > that it just wasn't simply happening. I suffered unbelievablely

> due

> > > to having this. I again would not change things being given the

> > > oppurtunity though. I feel in the end it has made me a much

> > > stronger and more tolerant person.

> > >

> >

>

[Guest guest]

Again I want to thank ALL who share their experiences dealing with BPES. I do not have BPES but my four year old son does. thank you for sharing your experiences. I want to emphasize that sharing all expereinces on this sight helps me, makes me think, and helps me make decisions. Peace to you all. AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Hi Ladies, My name is . I am 42 years old and I have a son who is almost 18 who also has BPES. At the risk of causing a great uproar on this site...I must say to you...when talking about suicide and all the down sides of BPES please keep in mind that there are new parents here and you are probably scaring the living day lights out of them. Remember that although you had a rough childhood (which I in no way want to down play) and a hard time dealing with BPES, not all of us had the same experience. Just as ANYBODY gets teased or tormented in school it is not always due to BPES, it could be a large nose, etc. etc. Both my son and I had our issues but we dealt with them as they happened and it has never been a huge issue. I can't say that my life would have been any different (minus the surgeries) without it. My son is in his last year of high school and has many, many friends. He

is into sports and plays in a band and has lots of self confidence and a great sense of humour. When he was really young he once said to me "I am ugly and stupid and I don't do anything right". And it broke my heart but he asked my "Why would anybody like me?" I of course reassured him that he was not ugly or stupid and that we may look a little different, with our special eyes, than others but that the world would be a pretty boring place if we all looked the same. What would make us unique? And then I told him among other things that people LOVED him because he made them laugh and how funny he was. I really think he has remembered that because he really plays on his sense of humour. Anyway all you new parents remember....that not all of your children will end up with BPES being an issue in their lives. But just as with the "general population" there are always going to be differences in people. Also,

it is so important to find a good surgeon with experience. I always wondered why my surgeon did NOT make our eyes open wider but he said that we would never be able to close them which would open us up to infections, etc. and I see from some of the posts how smart he really is. So new parents remember that as well, don't be discourged if even after surgery the eyes don't open really wide, as long as the sight is OK that is all that matters. Just my two cents worth and please don't anyone think I don't sympathize what they have gone through but I just want new parents to know it is not always as bad as it seems, Gunter <mrslittleeyes@...> wrote: Hey Sydney, My friend just had a baby 2 days ago and named her Sydney. But anyways thanks for writing. I was really mad yesterday when I read somewhere on there where someone had said "let's not forget it is purely a cosmetic defect". That is why I wrote what I wrote. My life has been so rough because of it. I really did think about suicide constanty from about ages 10-20. I was too chicken to do anything but shoot myself and so I thank God now that my family did not have a gun in my house because I know that I would have done it. The only source of comfort I had was my mother. She gave up everything for me. She suffered through every surgery with me and held me close and comforted me when I was hurting

whether it be from the pain I was in or from the torment I endured at school. She wrote that poem when I was like 2 years old and she would always read it to me and it too gave me hope. I have an appointment today to find out the results of a CT Scan I had done. I may end up having to have surgery on my nose/ sinus. The guy who did the CT Scan showed it to me and I could see where there is wire between my eyes. I also have had my eyelids folded back onto themselves and then sewn up to hold them open. I am not able to close my eyes in the traditional way (eyelids coming down) but what I am able to do is have my checks go up to meet my eyelids and I am able to close them this way. However, this causes stress in all of the muscles so I can't do it for too long. I end up getting very painful muscle aches from doing it. I sometimes wear an eye patch when my muscles are strainned too much to help rest my eye and eliviate the

pain. I also wear a eye mask to sleep 'cause I have trouble falling asleep because I can't close my eyes and it is just too bright to go to sleep. I also get lots of eye infections and my tear ducts don't work right either so my eyes sometimes water uncontrollably and run down my face. People always wan't to know why I don't wear make-up and that's a big part of it. First of all I don't really have much eyelid left to speak of so eye shaddow is kinda out. Any other make-up is just messed up when my tears run down my face. God, I would so love to talk to you in person. It is so nice to finally find people who know what I've ben through and can just relate. Talk to you again soon, I don't know if you have a myspace account but my myspace is www.myspace.com/love2adopt and my primary e-mail is love2adoptcomcast (DOT) net I don't know if you read it or not but I do have POF and so I adopted. I had a very emotional night last night after finding this group. It brought up a lot of painful memories that I had buried away. It also made me realize just how much I had missed out on in life. I never had a boyfriend or many girl friends either because no one wanted to be friends with the "freak" so ya know I never got to go to my prom or any other school function. I remember on prom night I just sat home and cried. Such a hard life we have had. I'm still infuriated at that person who said it was just cosmeti. Well I've got to go now 'casue now I'm crying again. tragedymae <xmissvixenxhotmail> wrote: ,I, too, have found Bleph to be much more than a cosmetic disorder.Obviously, my appearance has been important to me, but so much more ofmy life has been affected by this disease. Most importantly, thetrauma that I suffered from having painful surgeries as a baby left mewith permanent emotional disorders ranging from severe anxietydisorder to severe depression. I had night terrors until I was about15 about the "men with no mouths" (doctors) and I would dream aboutseafoam-green tiled operating rooms and scalpels. I also was a teenwho contemplated suicide and often injured myself because my wholesense of identity and beauty was completely altered. I'm notcompletely sure what kinds of surgeries I had or what condition I wasin when I was born, but I too had the surgery where part of my legmuscles were put into my eyelids, and I'm pretty sure it didn't work.My eyes are

literally sewn open, and I can't close them, and I neverwill unless I get more surgeries that will potentially drasticallyaffect my appearance. My eyes hurt every day because of this, I can'tsleep well because they hurt so much, I can't drive cars for more thana few minutes before the wind or heat dries my eyes out, I can't gowalking on a windy day, I can't kiss boys without wondering if they'relooking at me, and I can barely discuss all of this without crying...And most of this really wasn't a problem until my teenage years. As akid, I was fine. And after learning that I might end up with POF, mylife is even more different. I'm 23 years old and I don't have ahusband or a boyfriend to even try to have a baby with while I stillhave a chance, and I just don't know what to do (but I do have anappointment to get some testing done in a couple of weeks to find outwhat my situation is). I'm actually more interested in

adoptingchildren than I am having my own, but knowing that I'll never have thechoice is hard for me. I'm sorry that your life has been so affectedby Bleph, but thank you for sharing your story because my life alsohas been very hard. But like you said, I have become more tolerant,compassionate, and I think well-rounded because of this disease. Ihope we can talk more in the future.SydneyUpstate NY>> I was born with Blepharophimosis and I have read here that some > people say it is only a cosmetic defect. Maybe for some but not for > me and I'm sure not for all of us who have it. First of all I was > born completely missing my muscles and tendons so my eyelids did not > open at all!! I was also missing the bridge to my nose. Also

due > to my eyelids being completely closed for so long I suffered damage > to my eyes and was totally blind until 7 yrs old and legally blind > until 17. I also had some heart issues that were related to the > Blepharophimosis and also joint issuse in my feet, knees, hips and > back. These joint issues give me a good deal of pain. The most > painful thing was when my husband and I realized that I had POF > (Premature Ovarian Failure) due to the Blepharophimosis. I gave up > trying to become pregnant and adopted and I wouldn't have changed a > thing because my children are so wonderful. I now know it was a > blessing that I was choosen to adopt them. And also people are more > educuated today and so are kids. I'm sure that children still make > fun of kids a whole lot but when I was a child I actually thought > about suicide every single day because of the treatment I recieved

> due to the way my eyes and vision were. I was just tormented by the > other kids and when either I or my mother would speak up about it to > the school or parents I/ we were told that I was too sensitive or > that it just wasn't simply happening. I suffered unbelievablely due > to having this. I again would not change things being given the > oppurtunity though. I feel in the end it has made me a much > stronger and more tolerant person.> Check out the all-new beta - Fire up a more powerful email and get things done faster.

Don't get soaked. Take a quick peak at the forecast with the Search weather shortcut.

[Guest guest]

Thank you, ! You said exactly what I was thinking. Also, the positive views that are shared on this board have a great impact on the pre-teens and teens with BPES who read these posts looking support and comfort. They really want and need to know that they can live healthy, fulfulling lives despite their defects. When I share the positive posts with my daughter, her face lights up with hope, and in turn makes her BPES condition easier for me to bear. It is heartbreaking to know that there are people who endure such severe and painful symptoms, both pysically and mentally, due to BPES. Thankfully they have this support group to come to. I vividly remember when my daughter was an infant, feeling great despair and sadness regarding her BPES. I honestly thought it was the end of the world. When people explained the condition to me as being mainly

"cosmetic", and that many babies and parents endure much more difficult issues, I felt a ton of weight lifted off my shoulders.The thought of any parent feeling the way I felt back then is excruciating, so I choose to stress the positive and make it easier for them to bear. My daughter despises having BPES, but has learned to accept it and be grateful for the many gifts and talents she also genetically acquired.Kati Graw <katigraw@...> wrote: Hi Ladies, My name is

. I am 42 years old and I have a son who is almost 18 who also has BPES. At the risk of causing a great uproar on this site...I must say to you...when talking about suicide and all the down sides of BPES please keep in mind that there are new parents here and you are probably scaring the living day lights out of them. Remember that although you had a rough childhood (which I in no way want to down play) and a hard time dealing with BPES, not all of us had the same experience. Just as ANYBODY gets teased or tormented in school it is not always due to BPES, it could be a large nose, etc. etc. Both my son and I had our issues but we dealt with them as they happened and it has never been a huge issue. I can't say that my life would have been any different (minus the surgeries) without it. My son is in his last year of high school and has many, many friends. He is into sports and plays in a band

and has lots of self confidence and a great sense of humour. When he was really young he once said to me "I am ugly and stupid and I don't do anything right". And it broke my heart but he asked my "Why would anybody like me?" I of course reassured him that he was not ugly or stupid and that we may look a little different, with our special eyes, than others but that the world would be a pretty boring place if we all looked the same. What would make us unique? And then I told him among other things that people LOVED him because he made them laugh and how funny he was. I really think he has remembered that because he really plays on his sense of humour. Anyway all you new parents remember....that not all of your children will end up with BPES being an issue in their lives. But just as with the "general population" there are always going to be differences in people. Also, it is so important to find a

good surgeon with experience. I always wondered why my surgeon did NOT make our eyes open wider but he said that we would never be able to close them which would open us up to infections, etc. and I see from some of the posts how smart he really is. So new parents remember that as well, don't be discourged if even after surgery the eyes don't open really wide, as long as the sight is OK that is all that matters. Just my two cents worth and please don't anyone think I don't sympathize what they have gone through but I just want new parents to know it is not always as bad as it seems, Gunter <mrslittleeyes > wrote: Hey Sydney, My friend just had a baby 2 days ago and named her Sydney. But anyways thanks for writing. I was

really mad yesterday when I read somewhere on there where someone had said "let's not forget it is purely a cosmetic defect". That is why I wrote what I wrote. My life has been so rough because of it. I really did think about suicide constanty from about ages 10-20. I was too chicken to do anything but shoot myself and so I thank God now that my family did not have a gun in my house because I know that I would have done it. The only source of comfort I had was my mother. She gave up everything for me. She suffered through every surgery with me and held me close and comforted me when I was hurting whether it be from the pain I was in or from the torment I endured at school. She wrote that poem when I was like 2 years old and she would always read it to me and it too gave me hope. I have an appointment today to find out the results of a CT Scan I had done. I may end up having to have surgery on my nose/ sinus.

The guy who did the CT Scan showed it to me and I could see where there is wire between my eyes. I also have had my eyelids folded back onto themselves and then sewn up to hold them open. I am not able to close my eyes in the traditional way (eyelids coming down) but what I am able to do is have my checks go up to meet my eyelids and I am able to close them this way. However, this causes stress in all of the muscles so I can't do it for too long. I end up getting very painful muscle aches from doing it. I sometimes wear an eye patch when my muscles are strainned too much to help rest my eye and eliviate the pain. I also wear a eye mask to sleep 'cause I have trouble falling asleep because I can't close my eyes and it is just too bright to go to sleep. I also get lots of eye infections and my tear ducts don't work right either so my eyes sometimes water uncontrollably and run down my face. People always wan't to know why I

don't wear make-up and that's a big part of it. First of all I don't really have much eyelid left to speak of so eye shaddow is kinda out. Any other make-up is just messed up when my tears run down my face. God, I would so love to talk to you in person. It is so nice to finally find people who know what I've ben through and can just relate. Talk to you again soon, I don't know if you have a myspace account but my myspace is www.myspace.com/love2adopt and my primary e-mail is love2adoptcomcast (DOT) net I don't know if you read it or not but I do have POF and so I adopted. I had a very emotional night last night after finding this group. It brought up a lot of painful memories that I had buried away. It also made me realize just

how much I had missed out on in life. I never had a boyfriend or many girl friends either because no one wanted to be friends with the "freak" so ya know I never got to go to my prom or any other school function. I remember on prom night I just sat home and cried. Such a hard life we have had. I'm still infuriated at that person who said it was just cosmeti. Well I've got to go now 'casue now I'm crying again. tragedymae <xmissvixenxhotmail> wrote: ,I, too, have found Bleph to be much more than a cosmetic disorder.Obviously, my appearance has been important to me, but so much more ofmy life has been affected by this disease. Most importantly, thetrauma that I suffered from having painful surgeries as a baby left mewith

permanent emotional disorders ranging from severe anxietydisorder to severe depression. I had night terrors until I was about15 about the "men with no mouths" (doctors) and I would dream aboutseafoam-green tiled operating rooms and scalpels. I also was a teenwho contemplated suicide and often injured myself because my wholesense of identity and beauty was completely altered. I'm notcompletely sure what kinds of surgeries I had or what condition I wasin when I was born, but I too had the surgery where part of my legmuscles were put into my eyelids, and I'm pretty sure it didn't work.My eyes are literally sewn open, and I can't close them, and I neverwill unless I get more surgeries that will potentially drasticallyaffect my appearance. My eyes hurt every day because of this, I can'tsleep well because they hurt so much, I can't drive cars for more thana few minutes before the wind or heat dries my eyes out, I can't

gowalking on a windy day, I can't kiss boys without wondering if they'relooking at me, and I can barely discuss all of this without crying...And most of this really wasn't a problem until my teenage years. As akid, I was fine. And after learning that I might end up with POF, mylife is even more different. I'm 23 years old and I don't have ahusband or a boyfriend to even try to have a baby with while I stillhave a chance, and I just don't know what to do (but I do have anappointment to get some testing done in a couple of weeks to find outwhat my situation is). I'm actually more interested in adoptingchildren than I am having my own, but knowing that I'll never have thechoice is hard for me. I'm sorry that your life has been so affectedby Bleph, but thank you for sharing your story because my life alsohas been very hard. But like you said, I have become more tolerant,compassionate, and I think well-rounded because of

this disease. Ihope we can talk more in the future.SydneyUpstate NY>> I was born with Blepharophimosis and I have read here that some > people say it is only a cosmetic defect. Maybe for some but not for > me and I'm sure not for all of us who have it. First of all I was > born completely missing my muscles and tendons so my eyelids did not > open at all!! I was also missing the bridge to my nose. Also due > to my eyelids being completely closed for so long I suffered damage > to my eyes and was totally blind until 7 yrs old and legally blind > until 17. I also had some heart issues that were related to the > Blepharophimosis and also joint issuse in my feet, knees, hips and > back. These joint issues give me a

good deal of pain. The most > painful thing was when my husband and I realized that I had POF > (Premature Ovarian Failure) due to the Blepharophimosis. I gave up > trying to become pregnant and adopted and I wouldn't have changed a > thing because my children are so wonderful. I now know it was a > blessing that I was choosen to adopt them. And also people are more > educuated today and so are kids. I'm sure that children still make > fun of kids a whole lot but when I was a child I actually thought > about suicide every single day because of the treatment I recieved > due to the way my eyes and vision were. I was just tormented by the > other kids and when either I or my mother would speak up about it to > the school or parents I/ we were told that I was too sensitive or > that it just wasn't simply happening. I suffered unbelievablely due > to having this. I again would not change

things being given the > oppurtunity though. I feel in the end it has made me a much > stronger and more tolerant person.> Check out the all-new beta - Fire up a more powerful email and get things done faster. Don't get soaked. Take a quick peak at the forecast with the Search weather shortcut.

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[Guest guest]

Hi , I agree with what you said and I am sorry I did not mean to imply that ALL experiences shouldn't be shared...its just that I have spoken to some of the new parents on this forum and they are already scared enough. I just want people to know that growing up with BPES is not always bad. I do realize that there are different severities...and I do sympathize with those that have had a tough time. take care, rainamint@... wrote: Again I want to thank ALL who share their experiences dealing with BPES. I do not have BPES but my four year old son does. thank you for sharing your experiences. I want to emphasize that sharing all expereinces on this sight helps me, makes me think, and helps me make decisions. Peace to you all. AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

Everyone is raving about the all-new beta.

[Guest guest]

I am sorry if by saying what I said scared anyone but it is my story

aswell as others story. Part of the reason I wrote what I said is

because it upset me to have someone say that it was purely

a " cosmetic " defect. It isn't just a cosmetic defect. I guess for

some that is as far as it goes and that is wonderful. But it is not

for all of us. I'd rather have my eyes opened (No punt intened

here) to what others have gone through and be prepared to face and

deal with them than to wait until it was too late. Yes, I did think

about suicide as a way out and I recently spoke to my mom about it

and she was shocked. She was my best friend and thought she knew

everything about me. She told me that if she'd know that she would

have taken even more steps to be sure that I was safe and might have

done things different. So I think it is good for some parents to

know that this could happen. I'm not saying it will. Thank God

today schools and society are cracking down on kids making fun of

each other and what goes on in schools. Maybe it will make their

lives easier but when I was a kid in school in the Late 70's, 80's

and early 90,s it just went on and on and on and on.

> Again I want to thank ALL who share their experiences

dealing with BPES. I do not have BPES but my four year old son

does. thank you for sharing your experiences. I want to

emphasize that sharing all expereinces on this sight helps me, makes

me think, and helps me make decisions. Peace to you all.

>

>

>

>

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

> AOL now offers free email to everyone. Find out more about

what's free from AOL at AOL.com.

>

>

>

>

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

> Everyone is raving about the all-new beta.

>

[Guest guest]

Hello all, its Clare from Hertfordshire UK. Talking and sharing experiences is amazing... I am always amazed that so many different people share so many different experiences. I take my hat off too all of you that have opened your hearts on this site, I know myself this is not always an easy thing to do, especially with a subject as sensitive as this. I have BPES and so does my daughter, my sons dont. I was the first. I have been through rough stuff in my life, sometimes to do with BPES and sometimes not anything related to BPES, and I just want to share with all of you my feelings and thoughts. I am a personal development trainer, it is my job on a daily basis to show people how to live with confidence and assertiveness. It amazes me the things that some people have had to deal with through their lives, sometimes they

are quite young, and have gone through more than I have in my 38 years. Yet they are still there, strong, and surviving. The one thing I would like to say above all else, I completely understand that people on this site have had to 'deal' with BPES in their own way, whichever way that is, and the emotions whatever they are, are truly truly real. However, its actually what happens after these experiences and the way we get through it that makes us who we are. We are all still here, talking about it, sharing experiences and whether we understand it or not, those experiences have made us the person we are today. As I read through the e-mails my heart goes out to all of you. I have a daughter, as most of you know, who is the most precious most beautiful most amazing, patient kind friendly confident girl of 11 I know - she has BPES. I also have a

son who is the most precious most beautiful most amazing, patient, kind, friendly, confident boy of 9 i know.- he does not have BPES......... If people talk, share and inform others about BPES, it will help to become more confident and help others to understand. People dont mention to me at all any more, but are always interested when i mention it. In fact I was training just today and told all about my BPES, and one of the clients said to me, but aren't we all different in different ways. My answer had to be yes, even though I thought she doesnt truly understand, but at least we had had the conversation. For those of you who dont know, I learnt a great thing very early on in my childhood, i learnt to smile, a big beautiful smile, it is amazing, it takes peoples gaze from my eyes and to my smile, it breaks down all sorts of barriers, I have taught my daughter this too, and she has the most

amazing smile. Most cant help but smile back - those that dont - well ive got an exercise for that too, but not here I have waffled on enough. Obviously this is a real passion of mine, i am a qualified PD trainer and personal mentor, if anyone wants a chat more please feel free to mail me. I just want to say I am in no way telling anyone how to feel, just sharing a bit of my life through my eyes! Have Fun. Clare Teale Herts UK Kati Graw <katigraw@...> wrote: Hi , I agree with what you said and I am sorry I did not mean to imply that ALL experiences shouldn't be shared...its just that I have spoken to some of the new parents on this forum and they are already scared enough. I just want people to know that growing up with BPES is not always bad. I do realize that there are different severities...and I do sympathize with those that have had a tough time. take care, rainamintaol wrote: Again I want to thank ALL who share their experiences dealing with BPES. I do not have BPES but my four year old son does. thank you for sharing your

experiences. I want to emphasize that sharing all expereinces on this sight helps me, makes me think, and helps me make decisions. Peace to you all. AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Everyone is raving about the all-new beta.

Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains.

[Guest guest]

Thanks for that enlightening post, Clare. Obviously, a positive attitude goes a long way. Also, positive words shared with others can be very comforting. My 12 year old daughter sometimes reads these posts for inspiration and support. Although she also has endured physical and emotional issues associated with this defect, she never gets angry when others stress the mainly cosmetic symptoms associated with this defect. Instead, it gives her a sense of comfort and gratitude for the the things that are right in her life and with her health. It is hearthbreaking to know that there are others who experience such painful hardships with BPES, physically and psychologically. I hope they will find comfort through the many supportive people on this board, and the many positve stories shared. I remember once telling my daughter, "We cannot change BPES, but we CAN change our

attitude and acceptance of it." Once we were able to do that, as difficult as it was, BPES was no longer a problem, just an obstacle that we knew we could get past. I am sure that down the road, it will creep back up on us, but we will deal with those issues too. We refuse to let it get us down. Clare Teale <clareteale@...> wrote: Hello all, its Clare from Hertfordshire UK. Talking and sharing experiences is amazing... I am always amazed that so many

different people share so many different experiences. I take my hat off too all of you that have opened your hearts on this site, I know myself this is not always an easy thing to do, especially with a subject as sensitive as this. I have BPES and so does my daughter, my sons dont. I was the first. I have been through rough stuff in my life, sometimes to do with BPES and sometimes not anything related to BPES, and I just want to share with all of you my feelings and thoughts. I am a personal development trainer, it is my job on a daily basis to show people how to live with confidence and assertiveness. It amazes me the things that some people have had to deal with through their lives, sometimes they are quite young, and have gone through more than I have in my 38 years. Yet they are still there, strong, and surviving. The one thing I would like to say above all else, I completely understand that people on this site have had to 'deal' with BPES in their own way, whichever way that is, and the emotions whatever they are, are truly truly real. However, its actually what happens after these experiences and the way we get through it that makes us who we are. We are all still here, talking about it, sharing experiences and whether we understand it or not, those experiences have made us the person we are today. As I read through the e-mails my heart goes out to all of you. I have a daughter, as most of you know, who is the most precious most beautiful most amazing, patient kind friendly confident girl of 11 I know - she has BPES. I also have a son who is the most precious most beautiful most amazing, patient, kind, friendly, confident boy of 9 i know.- he does not have BPES.........

If people talk, share and inform others about BPES, it will help to become more confident and help others to understand. People dont mention to me at all any more, but are always interested when i mention it. In fact I was training just today and told all about my BPES, and one of the clients said to me, but aren't we all different in different ways. My answer had to be yes, even though I thought she doesnt truly understand, but at least we had had the conversation. For those of you who dont know, I learnt a great thing very early on in my childhood, i learnt to smile, a big beautiful smile, it is amazing, it takes peoples gaze from my eyes and to my smile, it breaks down all sorts of barriers, I have taught my daughter this too, and she has the most amazing smile. Most cant help but smile back - those that dont - well ive got an exercise for that too, but not here I have waffled on

enough. Obviously this is a real passion of mine, i am a qualified PD trainer and personal mentor, if anyone wants a chat more please feel free to mail me. I just want to say I am in no way telling anyone how to feel, just sharing a bit of my life through my eyes! Have Fun. Clare Teale Herts UK Kati Graw <katigraw > wrote: Hi , I agree with what you said and I am sorry I did not mean to imply that ALL experiences shouldn't be shared...its just that I have spoken to some of the new parents on this forum and they are already scared enough. I just want people to know that growing up with BPES is not always bad. I do realize that there are different

severities...and I do sympathize with those that have had a tough time. take care, rainamintaol wrote: Again I want to thank ALL who share their experiences dealing with BPES. I do not have BPES but my four year old son does. thank you for sharing your experiences. I want to emphasize that sharing all expereinces on this sight helps me, makes me think, and helps me make decisions. Peace to you all. AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Everyone is raving about the all-new beta. Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains.

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hey Sydney this is christine daughter. that letter was very good. that would be cool if we coulod meet some where. you sound like a very nice person or should i say you ar ea nice peron. oh yaeh my name is hannah. well i hope you will write back to me . well talk to you later. bye hannahtragedymae <xmissvixenx@...> wrote: , I would love to meet your daughter, and I'm sure

my motherwould love to meet you. She has been my rock, my support, through allof this. She helped pay for the three-day venture to Boston, eventhough the results might have been (and very much were) negative. Wewere very very very poor when I was a baby and she and my fathermanaged still to get the surgeries that I needed in the 80s. My mom iswilling to go anywhere with me to try ANY option to make my lifebetter, and without her, I don't think I'd even be alive today. Shehelped me survive EVERYTHING. She still tells me that when I was akid, I used to say that I had stomache aches before school everysingle day, and the truth was that I did - but I think now that it wasnerves, not just my ill stomach. I still get nervous going into anynew situation. The only time I feel comfortable is with my closestfriends. All through my college career, and even in work now, any newmeeting or class scares me; I'm afraid of talking in

front of peopleor having them look at me. I so sincerely appreciate yourunderstanding of this, even though it is not you that's feeling it,you seem to truly understand your daughter's feelings... it makes mefeel so much better knowing I'm not the only one that ever felt this.I don't want to sound like I'm happy that other people have had to gothrough this struggle, but just to know that there are people outthere, whatever age, that have felt the pain of this disease... itmakes it just that much more manageable. I think it would be wonderfulif we at least could set up a meeting. I live in Plattsburgh New York,just over the lake from Burlington, Vermont. I've never met anyone myage with Bleph, and I know your daughter is quite a bit younger, butif I could even help her in any way, it would be that much of a helpto me. Having Bleph is a daily struggle for me. Oddly, the only time Ihave relief from the pain is when I cry,

and most of my crying isbecause I have Bleph. Often, when I express this, people think it's afunny irony... but even typing all of this brings tears to my eyes andrelieves the dry pain I've had for three days now in my right eye. Itsounds stupid, it sounds silly to me, but that's just how it is...Anyhow, it's late and I really should get to bed, but thank you againfor telling me about your daughter. I wish that I had had this kind ofsupport or even recognition of my disease when I was 13, but that wasso long ago that we still knew almost nothing... , if thereis anything I can do to help your daughter, please let me know. Andthank you again, , for telling me about yourself. I know thatmost of the people in this chat group are parents of young children,so it's a comfort to find anyone of a similar age to me, and to beable to talk about what it's like to have Blepharophimosis. Thank youso much, all of you.

It really has been a gift to find you.Sydney> > >> > > I was born with Blepharophimosis and I have read here that some > > > people say it is only a cosmetic defect. Maybe for some but not > for > > > me and I'm sure not for all of us who have it. First of all I > was > > > born completely missing my muscles and tendons so my eyelids did > not > > > open at all!! I was also missing the bridge to my nose. Also > due > > > to my eyelids being completely closed for so long I suffered > damage > >

> to my eyes and was totally blind until 7 yrs old and legally > blind > > > until 17. I also had some heart issues that were related to the > > > Blepharophimosis and also joint issuse in my feet, knees, hips > and > > > back. These joint issues give me a good deal of pain. The most > > > painful thing was when my husband and I realized that I had POF > > > (Premature Ovarian Failure) due to the Blepharophimosis. I gave > up > > > trying to become pregnant and adopted and I wouldn't have changed > a > > > thing because my children are so wonderful. I now know it was a > > > blessing that I was choosen to adopt them. And also people are > more > > > educuated today and so are kids. I'm sure that children still > make > > > fun of kids a whole lot but when I was a child I actually thought > >

> about suicide every single day because of the treatment I > recieved > > > due to the way my eyes and vision were. I was just tormented by > the > > > other kids and when either I or my mother would speak up about it > to > > > the school or parents I/ we were told that I was too sensitive or > > > that it just wasn't simply happening. I suffered unbelievablely > due > > > to having this. I again would not change things being given the > > > oppurtunity though. I feel in the end it has made me a much > > > stronger and more tolerant person.> > >> >>

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