Re: Surgery? Its sickening - Please read

[Guest guest]

h and all - please read I have been a member for 4 years. This support group is a lifeline to me and many families, it is not all about surgery, just about people who need to talk about things, recently their has been conversations about surgery because that is what people have needed to talk about. I have BPES, so does my daughter Emy. My sons dont. I had surgery at 14 years of age, in reality too late really. My eyesight in my left eye is really bad, my right eye is not so good, but better. I have to wear glasses all of the time, the lense has been so thick all of my life it has been many the end of a bad jibe. (and I have felt on a daily basis how you feel, dealing with taunts and stuff from others about my eyes and glasses). Because of this we made the decision when my daughter was

born she would have surgery. We took her to the specialist who really guided us when she should have surgery (if at all). After revewing all the information it was the best thing that we could have done - We do not put our children through surgery or any procedure without completely looking at all options and taking guidance from our specialists. All people born with BPES are different, and require different attention. I am really really pleased that your sight has not been affected, and your decision not to have surgery has been the right one for you. Can I say my sight has been affected and if surgery had been an option earlier I may have not have suffered the way I have. Please all understand this is a very personal decision as BPES affects all in a very different ways. please know that the way

you live your life and the positive message you were sending through your words, is absolutely right. We should bring our children up to be confident happy people, who love themselves and give positve messages to everyone else. Its is also good that you have BPES before in your family, some mums and dads only know about BPES when they have a baby and are diagnosed (which isnt always immediate). Which then throws them into complete and utter confusion and all sorts of questions. At this point we are guided by specialist doctors and hospitals, and for some new parents this process in itself is very dificult. Let alone dealing with the BPES. We all want what is best for our children, for some it is surgery for some it isnt. All people, children, adults, mums dads, grandparents should encourage the confidence, inner love, big smiles and a fantastic attitude to life and other

people, if we do this the BPES is a very small part of our lives. Everyone has the right to an opinion, but that is exactly what it is. An opinion is only based on the facts and informaton that come from that persons situation, feelings and beliefs. We as a support group need to understand that anyone who mails or posts it is their opinon. Of course this site is here to help, support and guide people who have BPES or those or have suffered the effects of BPES. I completely understand how BPES can make us feel, I like everyone else on this site has feelings negative and postive about how BPES effects our lives. Thank you for reading this e-mail. Love Clare Teale and 3 kids and a husband, who are the most amazing fantastic confident happy wonderful people you could ever want to meet -

some with BPES and some without). h <kureeji@...> wrote: 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. Clare Teale incredit Ltd Saffron Ground Ditchmore Lane age, SG1 3LJ 01438 794439 direct line 01438 794444

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