Parents -- Please read. My story.

[Guest guest]

Dear parents,

Rather than taking up space on the board, I've put up a site with

some photos of myself in various stages of my life, that I hope will

give someone hope.

http://picturesofyou.org/bleph/

Here is my story, in brief:

My name is April. I am named after the Simon and Garfunkel song, not

because i was born in the month. I am about to be 25 years old.

I was born with bleph and ptosis, and have had two surgeries. I have

a fading scar on my leg from where they took some stretchy thing out

of my thigh (above my left knee on the outer side) and opened my eyes

slightly. i have stitch scars between my nose and each eye, but they

are hardly noticable. they told me to wait to have another surgery

until i was fully developed/past puberty, but by that time i would

have had to take too much time in recovery and it would have been not

easy. All I really have concrete beyond the scars is a piece of

paper diagnosing me and proposing possible courses of action. I

don't even have information about the surgeries i actually had.

I had a really hard time growing up, but from talking to friends

throughout the years, there are plenty of people who have for other

reasons. Mostly, people just don't understand. Adults don't even

ask, unless I'm really close friends with them. They probably just

talk behind your back, though. Now, I find kids to be much more

direct in these matters, in an innocent, curious way. of course

there are the kids who will make fun of anything different, but what

goes around comes around and those kids are probably working at

mcdonalds now. My parents were always very supportive.

I mostly hate being this, a lot. I don't think about it 100% of the

time, but I do think about it when I'm talking to someone/looking

them in the eye. and I spend about 30 minutes every morning putting

on eye makeup (no other foundation, lipstick, or anything else --

just the eyes) including coverup, eyebrow defining liner, shadow,

eyeliner (dark black or dark grey), and mascara. I try to make

myself look more asian by drawing little upsweeps on the outside,

like a cat, sort of. I don't know if it helps, but it makes me feel

better anyway. I can NOT leave the house without putting all of this

on.

I realize that the cosmetics probably draws more attention to my

eyes, but i think it's ok because at least i can try to even out

their sizes to my liking. I also try to distract by having hair that

often falls over my one, smaller, " bad " eye. A teacher once told me

I looked like veronica lake, but i knew better.

I've struggled with body image issues and self-dislike, but what girl

doesn't in a world accosted by media images of perfect women.

besides all that, i have had plenty of good times and happy moments.

I plan to see a geneticist soon to find out if a) i can have

children, it would be passed to my children. I find the lack of

real information on this issue to be frustrating, but understandable

because of the relatively small number of people sharing the

condition.

I would like to have another surgery to get something like asian

girls get to make them look more western, but it would be too

inconvenient because i wouldn't be able to work, etc.

Anyway, hope you enjoy the photos and the story.

sincerely,

april

[Guest guest]

Dear April,

I thank you for you story and wonderful honesty.

son of Washington

enc1pher <@...> wrote: Dear parents,Rather than taking up space on the board, I've put up a site with some photos of myself in various stages of my life, that I hope will give someone hope.http://picturesofyou.org/bleph/Here is my story, in brief:My name is April. I am named after the Simon and Garfunkel song, not because i was born in the month. I am about to be 25 years old.I was born with bleph and ptosis, and have had two surgeries. I have a fading scar on my leg from where they took some stretchy thing out of my thigh (above my left knee on the outer side) and opened my eyes slightly. i have stitch scars between my nose and each eye, but they are hardly noticable. they told me to wait to have another surgery until i was fully developed/past puberty, but by

that time i would have had to take too much time in recovery and it would have been not easy. All I really have concrete beyond the scars is a piece of paper diagnosing me and proposing possible courses of action. I don't even have information about the surgeries i actually had. I had a really hard time growing up, but from talking to friends throughout the years, there are plenty of people who have for other reasons. Mostly, people just don't understand. Adults don't even ask, unless I'm really close friends with them. They probably just talk behind your back, though. Now, I find kids to be much more direct in these matters, in an innocent, curious way. of course there are the kids who will make fun of anything different, but what goes around comes around and those kids are probably working at mcdonalds now. My parents were always very supportive.I mostly hate being this,

a lot. I don't think about it 100% of the time, but I do think about it when I'm talking to someone/looking them in the eye. and I spend about 30 minutes every morning putting on eye makeup (no other foundation, lipstick, or anything else -- just the eyes) including coverup, eyebrow defining liner, shadow, eyeliner (dark black or dark grey), and mascara. I try to make myself look more asian by drawing little upsweeps on the outside, like a cat, sort of. I don't know if it helps, but it makes me feel better anyway. I can NOT leave the house without putting all of this on.I realize that the cosmetics probably draws more attention to my eyes, but i think it's ok because at least i can try to even out their sizes to my liking. I also try to distract by having hair that often falls over my one, smaller, "bad" eye. A teacher once told me I looked like veronica lake, but i knew

better.I've struggled with body image issues and self-dislike, but what girl doesn't in a world accosted by media images of perfect women. besides all that, i have had plenty of good times and happy moments.I plan to see a geneticist soon to find out if a) i can have children, it would be passed to my children. I find the lack of real information on this issue to be frustrating, but understandable because of the relatively small number of people sharing the condition.I would like to have another surgery to get something like asian girls get to make them look more western, but it would be too inconvenient because i wouldn't be able to work, etc.Anyway, hope you enjoy the photos and the story.sincerely,april

[Guest guest]

April,

Thank you for sharing all of those pictures and your story. Seeing

people like you grow up with such positive attitudes really helps me

deal with my daughter having this disease. You appear to be a very

bright girl who grew up to be beautiful. You must have had

wonderful parents who were very supportive to you. I hope that I

can do the same for my daughter.

Thanks.

Dana (brooklyn's mom)

--- In blepharophimosis , " enc1pher " <@n...>

wrote:

> Dear parents,

>

> Rather than taking up space on the board, I've put up a site with

> some photos of myself in various stages of my life, that I hope

will

> give someone hope.

>

> http://picturesofyou.org/bleph/

>

> Here is my story, in brief:

>

> My name is April. I am named after the Simon and Garfunkel song,

not

> because i was born in the month. I am about to be 25 years old.

>

> I was born with bleph and ptosis, and have had two surgeries. I

have

> a fading scar on my leg from where they took some stretchy thing

out

> of my thigh (above my left knee on the outer side) and opened my

eyes

> slightly. i have stitch scars between my nose and each eye, but

they

> are hardly noticable. they told me to wait to have another

surgery

> until i was fully developed/past puberty, but by that time i would

> have had to take too much time in recovery and it would have been

not

> easy. All I really have concrete beyond the scars is a piece of

> paper diagnosing me and proposing possible courses of action. I

> don't even have information about the surgeries i actually had.

>

> I had a really hard time growing up, but from talking to friends

> throughout the years, there are plenty of people who have for

other

> reasons. Mostly, people just don't understand. Adults don't even

> ask, unless I'm really close friends with them. They probably

just

> talk behind your back, though. Now, I find kids to be much more

> direct in these matters, in an innocent, curious way. of course

> there are the kids who will make fun of anything different, but

what

> goes around comes around and those kids are probably working at

> mcdonalds now. My parents were always very supportive.

>

> I mostly hate being this, a lot. I don't think about it 100% of

the

> time, but I do think about it when I'm talking to someone/looking

> them in the eye. and I spend about 30 minutes every morning

putting

> on eye makeup (no other foundation, lipstick, or anything else --

> just the eyes) including coverup, eyebrow defining liner, shadow,

> eyeliner (dark black or dark grey), and mascara. I try to make

> myself look more asian by drawing little upsweeps on the outside,

> like a cat, sort of. I don't know if it helps, but it makes me

feel

> better anyway. I can NOT leave the house without putting all of

this

> on.

>

> I realize that the cosmetics probably draws more attention to my

> eyes, but i think it's ok because at least i can try to even out

> their sizes to my liking. I also try to distract by having hair

that

> often falls over my one, smaller, " bad " eye. A teacher once told

me

> I looked like veronica lake, but i knew better.

>

> I've struggled with body image issues and self-dislike, but what

girl

> doesn't in a world accosted by media images of perfect women.

> besides all that, i have had plenty of good times and happy

moments.

>

> I plan to see a geneticist soon to find out if a) i can have

> children, it would be passed to my children. I find the lack

of

> real information on this issue to be frustrating, but

understandable

> because of the relatively small number of people sharing the

> condition.

>

> I would like to have another surgery to get something like asian

> girls get to make them look more western, but it would be too

> inconvenient because i wouldn't be able to work, etc.

>

> Anyway, hope you enjoy the photos and the story.

>

> sincerely,

> april