Surgery?

Blepharophimosis
#1

Im struggling right now to write this post with some sort of tact. I thought this was a support group for people with “blepharophimosis” but to me it seems like surgery is what is being supported…

I would never dream of having surgery. What would i tell my child, when it was born, with eyes like me? How could i justify it, and tell him or her that she is beautiful, except one thing, which surgery could “fix”? How could i make him face the world alone, if i had went through surgery to get ‘normal’ eyes? The child would come out with a perception innately that something was wrong with him. Why else would mom have changed herself, if there wasnt a problem?

I hear of kids going through 3 or 4 surgeries. I dont know if non affected parents have a complete understanding of just how…disturbing this is.

In my family, people have had eyes like mine since before my great grandmother. I cant imagine what it would be like for two parents without the eyes to have a kid with the eyes. They must feel estranged, upset, scared, i dont know.

But out of the bottom of my heart i would urge every single parent who ever has a child with the eyes to think about what they are doing.

I grew up with family, constantly telling me i was beautiful, that there was nothing wrong with me and i had as much right to be on the earth as anyone else. I dont know what it would be like to be alone, never seeing a family member with eyes like yours, and then to have your parents show you in the direction of surgery.

My eyes dont give me a huge vision problem, i dont even have ANY vision problems. So for an unaffected parent to give their child surgery at the age of 3 or 5 or something just really really upsets me. I was taught love and acceptance of peoples differences.

I have been mocked, ridiculed and degraded my entire life by people who dont understand because of my eyes. But at the same time, i would never get surgery to fix my outside appearance. It wont change my genes.

Fuck being normal. Seriously. The people who hold my company love and accept me for who I am. Ive waded through the callous assholes, and the friends i have now are true friends. A little bit of extra skin around my eyes doesnt change the way they feel about me. Sometimes i thank god i was born this way. Now i know people love me for me instead of strictly my appearance.

This post is huge and rather unorganized…but we aren’t diseased, people. We have extra skin on our eyelids, and some of us have vision restrictions. We have all of our limbs. We can talk, be articulate, create things…Any time i feel bad about my eyes i just think about people confined to wheel chairs, people who cant take care of themselves or who have mental disabilities.

Do people put their children through surgery saying they want to make their children feel better about themselves???

I didnt even know my eyes were any different than anyone elses till i was about 5, and even then it was a tentative understanding that i was different.

I think maybe its the parents who feel uncomfortable. Maybe they want to make themselves feel better about the way their child looks, and not vice versa.

Im not trying to attack anyone personally, and if you want to call me an asshole, or hate my words, please feel free. But i will tell you that i live this everyday.

My cousin went to go have corrective surgery on her eyes. The only one in our entire family out of three generations. The doctors messed up the operation and now she has limited function of one eye. You tell me what is better.

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

#2

I just want to look normal. It’s great that parents tell their children that they are beautiful, but it’s another thing all together when everyone else seems to be telling you the opposite.


I wish I could have another surgery - they knew nothing about this stuff when I was born in TN. There was no internet or WebMD in the late 1970s, so your doctor was only as good as what they had seen or read in journals.

I would simply love to have a surgery now as an adult that would make me look like everyone else. Actually if I had one wish (that for some reason couldn’t be to NOT have this at all), I would wish that I could have been completely fixed before I had to go through HELL as a child. I have so many emotional scars that could have been avoided if I just had normal looking eyes. It’s so stupid. It’s so stupid how superficial others can be. It’s so stupid that I have been led to feel inadequate, but it’s an unfortunate truth that people judge books by their covers. And no amount of my parents telling me I was beautiful can ever fix that.

I do everything I can today to look “normal” - wearing heavy makeup and avoiding photographs. I hate it. It is a daily struggle to leave the house, to feel comfortable with people I don’t know, to spend 30-40 minutes doing makeup that makes me look more normal to people.

I wouldn’t wish this life and these feelings on anyone. I wish this didn’t define me. I wish I could have an adult surgery. I just don’t know where to start, and my entire life and horrible memories before that surgery would still not be magically erased even if I had one now as an adult.
#3

dear lissah,

not being an english native speaker/writer i shall try to answer briefly.
our son was the first in the families (me and my wife) with
blepharophimoses. his daughter, our granddaughter has b. as well.

our son had surgery when he was 14 and it was succesfull. every time the
discussion coms to b. he tells us how happy he was and is thet it has been
done.

lisa our granddaughter had an eyelid correction when she was 8 months. the
docter assured us all it was necessary for the development of her eyes
(function) it was not a plastical surgery.

i think our son and his wife will have to tell lisa what b. is and what can
be done. she has her father as an example. i’ m quite sure lisa will be
operated as soon as it is medically possible and social desirable.

although i do not agreee with your arguments, i respect your decission. i
would appreciate if you would do the same to those who think different.

best regards,
dolph heideman
purmerend - the netherlands

#4

Hello Lissah,

My whole family has congenital ptosis, my grandfather, my dad, my sister, cousins, aunt and uncles.

I too like you went through a hideous time at school but found that telling people about the condition made them understand and they soon got used to the idea. As there are a number of my family members in the same town I have found that we are accepted and people do not feel the need to stare, we only look slightly different after all. But I have found that when on holiday or in a strange town, people do notice us and I think they are more embarrassed then me when I go up to them and speak to them. I agree with you it is the unknown that makes people stare.

We had always assumed that the male of the family passed down the gene as they were the only ones to have children with ptosis. My sister who has the condition had two daughters who do not have it, nor does my son. Amazing my 3 year old daughter does. We have since learn’t that there is a 50/50 chance, if you do have the condition to pass it on to your children. Subsequently my nieces and son are not carriers and will not pass it on. With that in mind why would you not have surgery, when your children might not have the condition anyway, what are you going to tell them when they ask, “why are you different?” You will be very surprised how accepting children are, we have had to explain to the unaffected children in our family and it’s all ok with them. In my son’s case he feels privileged that he is part of such a special family. My sister and I had surgery when we were 8 and 6 years old, it did not make a huge difference at the time but we found that we did not have to lift our heads any more, which has improved our posture. We have cousins who have not had surgery, who have had to have many years of physio on their necks and backs. Our eyes over the years have “grown” and people do not notice a difference at all.

My daughter is beautiful and we tell her all the time that she is cute, which is not out of the ordinary for all parents to tell this to their children. I do not wish her to go through the same teasing as we had at school. At primary school children are alot more accepting but it is the secondary school children that worries me and this is where I was always “mocked, ridiculed and degraded” (your words). I would hate for my daughter to go through the same and I am sure that you would not want this for your child either IF he/she actually gets ptosis. My eldest niece has very blonde almost white hair and is finding her new school difficult at the moment because of her hair colour, some children will find the smallest thing to point out and alienate, they are only jealous that they are not “special” too.

Samantha will be getting some plastic surgery on her eyes to help improve her peripheral vision. We will let her decide when she is older if she would like any further surgery, perhaps to give her eyelids a more natural look. My husband and I feel this small operation will be beneficial for Samantha and we are acting in her best interest.

I am sure that if this condition was only cosmetic then no surgery would be warranted but Lissah please try and appreciate that some children / adults need the operations to enhance their lives and help them to see the world better. I hope you now understand a little more why parents find reassurance at this “support group” online. Some do not have the same family support / knowledge as we have had. I am glad that this site can help them feel less alone. They feel comfort in the knowledge that are not the only ones going through a traumatic time when it is usually more upsetting for the parents than the children.

I am sure that the site will thank you for your points of view and people can see that you have managed admirably without surgery. I realise that you have had to overcome a lot and have been hurt by insensitive comments as have we all. Chill !

Thanks again

Mandy Naylor

#6

Lissah,

I am sorry to hear that this group has upset you. My daughter Avery had
a sling surgery at 3 months because her eyes would not open. My husband
and I did not want our daughter to be blind…so we had the surgery.
She still has small eyes, but we love them. She has a look that is so
unique…everyone that meets her wonders her nationality. I would not
change her small eyes for the world.

I wish the best for you and hope that you can understand that some of
the group members here have no previous experience with Bleph. You have
grown up in a family that understand and live with it everyday…we are
here because we do not have family (Avery is the first with small eyes
in our family) that we can talk and understand. I will support my
daughter everyday and in everyway, but I will NEVER be able to fully
understand what she is going through…I only hope someone that lives
with Bleph everyday will be on this site to help her understand her
personal journey with Bleph…as I cannot.

Thank you for you post,
Nicki Venable

#8

Hi Lissah

The one and only reason we ‘put’ our daughter through surgery was because
her pupils were covered so vision impaired and if left she could have become
blind. Before you start putting all parents in the same ‘basket’ maybe
consider all cases are different and you are lucky in the fact your vision
is not impaired.

I also think the word ‘f**k’ is unnecessary in a forum!

Regards
Lucy

#9

I agree…I think of this forum as family and can we please keep
information at a PG nature.

Best Wishes,
Nicki

#10

Lucy,

I should have stated that i was referring to people whose vision isnt seriously affected.

I posted this on yahoo groups and made a few people upset as well, but it was never my intent.

I will also censor my language so as not to offend.

Sorry, with all my heart.

Melissah

#11

Before this gets out of hand, let me clarify.

I never thought that people would think it so bizarre to keep their eyes.

Im not an angry person, Im just angry that no one seems to think that NOT having surgery is the answer, or that its a valid option.

Is our society really that micromanaged that we have to systematically erase any part of ourselves that is different at any cost, even if physically we arent being harmed by it? (And im not saying thats the case for everyone)

Im trying to say that [unless youre suffering] our eyes aren’t the problem!

Ive thought about getting surgery my ENTIRE life. There isnt one time that i have been made fun of that i havent thought about getting surgery. But then i began to think, why should i feel bad about myself because of these other people? Why should their cruelty motivate me to feel ashamed, that i should change?

I dont think i would have the strength to go into surgery and then wake up to see a different face than ive always had. Ive thought a hundred thousand times over whether i should get surgery.

I dont mean to make anyone angry… I realize now that just because my family supports my eyes that not everyone views having eyes like this as “ok.” and most see it as something that should be fixed. (Im referring to people like me who dont have any blindness or vision impairment)

I do apologize a thousand times over for my first post being brash, or disrespectful, or judgemental.

I understand that there are all levels suffering involved with
blepharophimosis. I understand that we all want the best for our
loved ones, children and family members.

If i made any member of this group feel like i condemn medically
neccessary surgery, then i am very sorry. My personal opinion is
that i do not believe cosmetic surgery is the answer.

I think that no matter what, you will always be able to tell that
someone was born with blepharophimosis.

Ive been told that i ooze ignorance because of my opinions. So be it.
Im very aware that you can go blind if your eyes are not utilized and
exposed to light. Just because I am not blind doesnt mean i do not
suffer. There are days that my eyes water all day, due to sensitivity
to light and the fact that some of my eyelashes fold inwards and
irritate my eye. I end up rubbing my eyes until they are red, raw and
painful. I use eyedrops but it doesnt help. Its embarassing, people
stare at you, and it makes it harder to function.

But that isnt enough to make me go have surgery. Somedays i have bad
days, when its really windy. Most of the time, i feel no different
than anyone else.

Each individuals story is different. Everyone should be able to make
their own decision. I posted my honest opinion but not with the
intent to make anyone’s lives or the decision making process any
harder. I just wanted to share my experience. Sometimes hearing
something from one person can make all of the difference.

#12

Hi Lissah

Thank you for your reply. I’m glad that you have now made clear there are
all different angles on BPES. We are all going through this in some way
whether we are parents or those with BPES but this forum was designed to all
help each other and thank you for sharing your views.

I agree with you about society and how they treat others but just hold your
head up high and remember we are ‘all’ beautiful.

Thanks
Kind regards

Lucy

#13

Congenital blepharophimosis is virtually unknown in the UK. My husband and 2 siblings have this condition. It is a severe case and without surgery they would be severely hampered.

Surgery in the 1950’s was done by plastic surgeons who specialized facial surgery on second world war casualties and was mostly successful but left disfigurement.

In 1984 our son was born with the condition and his father wanted only the best for him. By the age of 18 months he walked with a stoop to see where he was going. We visited a surgeon Mr Richard Collin at Moorfields Eye Hospital and he operated at 3 and 5 years of age. After the first operation to remove the epicanthric folds the the eyes opened up. After the 2nd op to lift the eyelids and remove muscle from the leg and use behind the eyelids the difference was dramatic. My son said that he could see the sky and the floor at the same time. He is 22 now with a girlfriend and looking forward to having his own children.

Please look to the future and realise that caring parents want the best for their children and those that make the decision to go with surgery believe they are giving the best chance for the future. My son is happy and well adjusted and I know his children have surgery if needed just like him and his father.