Open Minds

[Guest guest]

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. And like Patsy said, it would

be helpful not to 'wage war' with the way you were born, who you are.

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.

[Guest guest]

h, I'm 47, I had surgery at 28. For a number of reasons. Yes, to look more "normal" but I think anyone with BPES knows our "normal" and everyone else's "normal" isn't the same. But I needed the surgery because of some of the very reasons you just posted. You have and I am sorry to have to tell you this but some of the problems you are having can and probably should be corrected with surgery. I had some of those problems, the surgery helped but liked alot of things the surgery caused some problems too but in all I have never regretted having surgery. I think the email you posted that had everyone so upset was the "sickening" part. There is enough problems with BPES, judging one another with BPES, shouldn't even come up. This group is a support. Just like your family was a support for you. My family never really talked about why 4 out of 8 children where different. It just was. I'm the youngest and I WANTED to know. I

started the ball rolling in my family, now both of my sisters have had surgery. I pray for you that you never know the full problems that can be with BPES as a woman. My sisters and I do not have children because we are sterile. I went through menopause at 26(that will make you grow up FAST). Please understand I am in NO WAY saying you or the way you feel is wrong. But, I'm a nurse and believe me NO parent elects surgery without first thinking about it. Your letter, while well intended, made it seem that surgery was just a quick fix. I hope for your sake you are never faced with a decision where you have to choose, Do I do this because it will make my life better or Do I simply live with this because this is the way it is. And I'm not talking about our eyes, I'm talking about having an accident and loosing an arm or leg. Would you get a prosthetic arm or leg? or just be? I hope and pray that you and your family continue to

support one another in any decision each of you have to make. Janiceh <kureeji@...> wrote: 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. And like Patsy said, it would be helpful not to 'wage war' with the way you were born, who you are.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.

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