More Surgery?

[Guest guest]

My son is 16 years old, he has done exceptionally well dealing with his

bleph. He had surgery at 3. While I know at times it bothers him that

he has as he refers to them " weird eyes " - it has not slowed him down in

anyway. In Elementary school he had the lead role in a musical, plays

all sports..has many friends..etc. Was out to dinner with him the

other night when he remarked about his weird eyes ..while we have

always told him if he wants to look into it, we can look into more

surgery- but have never wanted him to feel like he needed to look any

different to us..he is just fine..but now I think he would like to look

into it, but is afraid of what the outcome might look like. Any words

of wisdom for a Mom with an adolescent who is feeling confused about

what course of action to take? I would be very grateful. Also we live

in New York State if anyone knows of surgeons who specialize in Bleph.

[Guest guest]

I have bleph and have only learnt that's what it is. Even though my

family and the docs never knew what it was I still had 2 operations -

the first when I was 13 and the next at 14 and I have to say it was

the best thing I ever did! I imagine your son is at the stage in life

where appearance plays a huge part. When I was 16 I would have given

anything to have 'normal' eyes. After the surgery it seemed like it

took a long time for my eyes to appear somewhat normal but leading

into my adult life I was really comfortable with them and I was

grateful to feel more at ease with my appearance.

I have only discovered Bleph because my 6 week old daughter Imogen

was born with the same eyes and that prompted me to look further into

it. I had my surgery later in life as the doctors wanted to wait

until I was fully grown so they knew what they had to work with. I'm

not sure whether we should wait until Imogen is fully grown or look

into surgery earlier so if you could let me know what sort of surgery

he had done and if it worked that would be great.

I understand that talking to teenagers about their looks can

sometimes be a difficult thing but maybe you should discuss the

options with your son. I can understand if he's afraid what the

outcome might be, so was I. I expected my eyes look different

straight away but it took time.

I hope this has been of some help.

(australia)

[Guest guest]

Hi Joan,As the mother of a 13 year old daughter with BPES, I share your feelings and concerns. also had surgery at the age of 3, and is seriously considering undergoing additional surgery. She begs her Opthomologist/Plastic Surgeon at each yearly check-up, but he feels that she does not have enough excess skin to work with at this point. He explained that the more loose skin he has to work with, the better the results. We live in Rhode Island, but her Opthomologist no longer treats children, unless he has performed their prior surgeries. Though gifted and brilliant in cosmetic surgery, he now only treats adults. (hmmm, maybe I should start saving up......)Sorry that I am unable to refer an Opthomologist to you, but I wanted to let you know that I understand the agony of knowing that your child is not happy with their appearance. (Is there actually a teenager that is???) All we can do is boost their

confidence, and support their decisions.I wish you and your son the best of luck.readjoanread <sweeney_joan@...> wrote: My son is 16 years old, he has done exceptionally well dealing with his bleph. He had surgery at 3. While I know at times it bothers him that he has as he refers to them"weird eyes"- it has not slowed him down in anyway. In Elementary school he had the lead role in a musical, plays all sports..has many friends..etc. Was out to dinner with him the other night when he remarked about his

weird eyes ..while we have always told him if he wants to look into it, we can look into more surgery- but have never wanted him to feel like he needed to look any different to us..he is just fine..but now I think he would like to look into it, but is afraid of what the outcome might look like. Any words of wisdom for a Mom with an adolescent who is feeling confused about what course of action to take? I would be very grateful. Also we live in New York State if anyone knows of surgeons who specialize in Bleph.

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[Guest guest]

Hey there,

Im 20 years old, so i guess that ive just gotten out of my teenage

years, quite literally. I still have different opinions about my eyes

everyday, but overall im glad that i have not gotten surgery. My

mother always let me know that it was my decision but she never

pushed me one way or the other. I honestly got the feeling that it

didn't matter what i did, either way, lol. She married my father, who

has my eyes, so i think that the appearance was something she was

familiar with and accepted lovingly. My family doesnt have an extreme

case, you can look at my picture folder if you want to see a picture

of me. I dont mean to offend by saying that, but to clarify what i

mean is that none of us experience any severe limitation of vision or

serious problems that can come in association with blepharophimosis.

We haven't experienced that in my family.

Ive gotten mixed responses before when ive said that i dont believe

surgery is the answer for my case, but i will stand by that. im glad

as an adolescent i didnt change the way i looked, because i was

pressured several times when i desperately wanted to be the same as

everyone else.

At that age i was influenced by social pressure like any other kid.

And in hindsight i know that i did not really have insight about

myself like i thought i did. My perceptions of who i was were still

growing. At that age you are dealing with image and trying to figure

out how you fit into the world.

I think changing my eyes will never really fix the fitting in

problem, and i think thats normal, and good, because all of us deal

with that and it helps us make a stand about what we believe in.

Im a healthy person, i have a great family and tons of friends. In

highschool i was a popular person, but i did get teased and bullied

by some people. I wont lie, it sucked. The people who make you feel

bad in highschool never matter later in life anyway. Its just that

the bubble around you while you are growing up is so small that its

the hugest deal at the time.

I think that its going to be really tough when i have children,

explaining to them and them supporting them in whatever decisions

they will later make, if they have eyes like me. Its a blessing and a

curse to be able to give them something that has taught me a lot in

life. I dont know if that makes sense?

In the end i guess i couldn't deal with changing the face ive always

had. It may sound weird but its my body and its just the way i am,

even though its a genetic mutation.

Its a really hard subject to approach. I wish you the best and hope

that this letter gave you some sort of help, as a young-ish person

writing it.

h

>

> My son is 16 years old, he has done exceptionally well dealing with

his

> bleph. He had surgery at 3. While I know at times it bothers him

that

> he has as he refers to them " weird eyes " - it has not slowed him down

in

> anyway. In Elementary school he had the lead role in a musical,

plays

> all sports..has many friends..etc. Was out to dinner with him the

> other night when he remarked about his weird eyes ..while we have

> always told him if he wants to look into it, we can look into more

> surgery- but have never wanted him to feel like he needed to look

any

> different to us..he is just fine..but now I think he would like to

look

> into it, but is afraid of what the outcome might look like. Any

words

> of wisdom for a Mom with an adolescent who is feeling confused

about

> what course of action to take? I would be very grateful. Also we

live

> in New York State if anyone knows of surgeons who specialize in

Bleph.

>

[Guest guest]

Great attitude h!Stay proud of who you are (and how you look)!h <kureeji@...> wrote: Hey there, Im 20 years old, so i guess that ive just gotten out of my teenage years, quite literally. I still have different opinions about my eyes everyday, but overall im glad that i have not gotten surgery. My mother always let me know that it was my decision but she never pushed me one way or the other. I honestly got the feeling that it didn't matter what i did, either way, lol. She married my father, who has

my eyes, so i think that the appearance was something she was familiar with and accepted lovingly. My family doesnt have an extreme case, you can look at my picture folder if you want to see a picture of me. I dont mean to offend by saying that, but to clarify what i mean is that none of us experience any severe limitation of vision or serious problems that can come in association with blepharophimosis. We haven't experienced that in my family. Ive gotten mixed responses before when ive said that i dont believe surgery is the answer for my case, but i will stand by that. im glad as an adolescent i didnt change the way i looked, because i was pressured several times when i desperately wanted to be the same as everyone else. At that age i was influenced by social pressure like any other kid. And in hindsight i know that i did not really have insight about myself like i thought i did. My perceptions

of who i was were still growing. At that age you are dealing with image and trying to figure out how you fit into the world. I think changing my eyes will never really fix the fitting in problem, and i think thats normal, and good, because all of us deal with that and it helps us make a stand about what we believe in. Im a healthy person, i have a great family and tons of friends. In highschool i was a popular person, but i did get teased and bullied by some people. I wont lie, it sucked. The people who make you feel bad in highschool never matter later in life anyway. Its just that the bubble around you while you are growing up is so small that its the hugest deal at the time. I think that its going to be really tough when i have children, explaining to them and them supporting them in whatever decisions they will later make, if they have eyes like me. Its a blessing and a curse to be

able to give them something that has taught me a lot in life. I dont know if that makes sense? In the end i guess i couldn't deal with changing the face ive always had. It may sound weird but its my body and its just the way i am, even though its a genetic mutation. Its a really hard subject to approach. I wish you the best and hope that this letter gave you some sort of help, as a young-ish person writing it. h > > My son is 16 years old, he has done exceptionally well dealing with his > bleph. He had surgery at 3. While I know at times it bothers him that > he has as he refers to them"weird eyes"- it has not slowed him down in > anyway. In Elementary school he had the lead role in a

musical, plays > all sports..has many friends..etc. Was out to dinner with him the > other night when he remarked about his weird eyes ..while we have > always told him if he wants to look into it, we can look into more > surgery- but have never wanted him to feel like he needed to look any > different to us..he is just fine..but now I think he would like to look > into it, but is afraid of what the outcome might look like. Any words > of wisdom for a Mom with an adolescent who is feeling confused about > what course of action to take? I would be very grateful. Also we live > in New York State if anyone knows of surgeons who specialize in Bleph. >

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