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New member Mara

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Thanks for posting your photos. What a beautiful young lady you

are. I, like you, are a new member and until recently did not even

know the name of my condition. I have had four surgeries and my eyes

don't look nearly as good as yours do. Where did you have your last

surgery done? I am 40 years old and am considering having another

surgery. Has anyone had a surgery as an adult, and if so, how did it

turn out? Also, I went to a fertility specialist and a number of

physicians regarding my inablility to get pregnant and not one ever

diagnosed my infertility as being related to BPES. I am almost

relieved to finally learn the reasoning behind my infertility. The

fortunate part is that I was able to adopt two beautiful children.

So please know that just because you may not be able to have children

physically, you can still have children. I was wondering if the

infertility is only in BPES women, or are there fertility issues with

BPES men? I love reading your messages and seeing the photographs.

It's like I have finally found others who know how I feel.

Ps: If anyone is interested in discussing adoption opportunities, I

would be happy to share my experiences.

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Hi GIna-

Thanks for the lovely compliment! I completely agree with you, it's so refreshing to finally find other people who understand what I went /going through.

The last surgery I had was at the Children's Hospital in Philadelphia and my surgeon was Dr. Katowitz. He performed all my surgeries. I'm not sure if he does adult surgeries but I'm sure he can recommend someone.. How old were you when you had your last surgery?

It's very frustrating because the doctors I have seen regarding pre mature ovarian failure never mentioned that it could be related blephs. In fact, I did some research on my own and had to bring it to their attention. I wish that they discovered this FOX L 2 chromosome mutation earlier because I may have been able to freeze my eggs, etc when i was younger. However., the good news is that they did discover it and the research will benefit young girls w. blephs!

I'm not ready to have a baby yet but have been thinking about all my options. Adoption is definitely something I would consider. How old are your children? Where did you adopt them from?

Maramcauley982 <mcauley982@...> wrote:

Thanks for posting your photos. What a beautiful young lady you are. I, like you, are a new member and until recently did not even know the name of my condition. I have had four surgeries and my eyes don't look nearly as good as yours do. Where did you have your last surgery done? I am 40 years old and am considering having another surgery. Has anyone had a surgery as an adult, and if so, how did it turn out? Also, I went to a fertility specialist and a number of physicians regarding my inablility to get pregnant and not one ever diagnosed my infertility as being related to BPES. I am almost relieved to finally learn the reasoning behind my infertility. The fortunate part is that I was able to adopt two beautiful children. So please know that just because you may not be able to

have children physically, you can still have children. I was wondering if the infertility is only in BPES women, or are there fertility issues with BPES men? I love reading your messages and seeing the photographs. It's like I have finally found others who know how I feel. Ps: If anyone is interested in discussing adoption opportunities, I would be happy to share my experiences.

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--- In blepharophimosis , Mara Bogoloff <marabogs@y...>

wrote:

>

>Dear Mara,

My Name Is Nina and I have a daughter who just turned 1 who has bpes.

We also saw Dr. Katowitz who does want to do surgery but three other doctors

said her ptosis is too mild to do surgery. Can you tell me why you chose

Katowitz. I don't feel I get his undivided attention when I am with him. I

know

he is supposed to be one of the best. ( your eyes look great!!) Please let me

know.

Thanks

Nina asadoorian

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--- In blepharophimosis , Mara Bogoloff <marabogs@y...>

wrote:

>

>Dear Mara,

My Name Is Nina and I have a daughter who just turned 1 who has bpes.

We also saw Dr. Katowitz who does want to do surgery but three other doctors

said her ptosis is too mild to do surgery. Can you tell me why you chose

Katowitz. I don't feel I get his undivided attention when I am with him. I

know

he is supposed to be one of the best. ( your eyes look great!!) Please let me

know.

Thanks

Nina asadoorian

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