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Hello All,

Being in IT I am ashamed of myself that I have never thought to look

this up on the Internet before. I am 39 years old and have a 14

year old son, and both of us have bleph.

I just got a new computer today and for some reason looked it up

tonight, I have been reading your letters with great interest for

hours. I was glad to have read that other older people had the same

sort of upbringing as I (where the condition was never talked

about). I have a brother and sister and I am the first and only one

(until my son) in my family to have it and it was just something

that was never spoken about when I was a child.

I try to be as open as I can with my son who has had 3 surgeries,

the last being in 2000. I consider myself to be a well adjusted

adult (who also by the way has had infertility problems) but I would

be interested in hearing from people who have had surgery that has

been successful for my son's sake. His surgeries have not made a

huge difference.

Thanks,

Kati

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  • 2 months later...
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hi my son Lynden had his first surgery at 6 weeks old and like Shauna said (see earlier post) it all depends on your child's vision for when most doctors do any kind of surgery, my child was fine after his surgeries and he has had 4, (usually a child is fine after the surgeries) but you will get some cases that a child does not react as well as others and if you look back in earlier posts the ones who have had surgery were of all ages. in the end it is up to you. we are here for support if you need it and we can all answer pretty much any question you have, welcome to the site.

Tonikka

-----Original Message-----From: jricard5 [mailto:jricard5@...]Sent: April 21, 2004 9:53 AMblepharophimosis Subject: blepharophimosis New to the siteHi, My name is Jill. My baby, Ruth, is 4 and1/2 months old. She was born with BPES. The doctors want to have a temporary surgery done on her eyes. Has anyone heard of it this young. I'm not sure how I feel about it.

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My son Garrett was 4 months old when he had his temporary surgery done. As

said before, it usually depends on how much of the pupil is showing.

Garrett couldn't even open his eyes for the first 3 wks he was born, and

after that he could only open one eye at a time for a few weeks. When he

could open both eyes you couldn't see hardly either of his pupils. My

husband thinks that his vision problems are because they waited too long to

do the temporary surgery. He's had glasses since he was 1 and gets a new

prescription every 3-4 months. Thankfully he's had this current

prescription for about 7 months. He is now 5 yrs. Old, 6 in July, and

awaiting his ptosis surgery which has been cancelled twice now.

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