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Hi all,

I am thankful to have found this group! My name is and I am

affected with BPES and my daughter Paige was also born with it. There

is no other family history of BPES so it originated with me. I had no

idea what I had until my daughter was born with the same shaped eyes

two years ago and my husband and I started researching. I had

corrective surgery when I was a year old where a plastic surgeon

corrected the inside corners, and then a follow up sugery was

performed to lift the lids at age five. I have had no other surgeries.

I am in the process of speaking with doctors in my area (I live in

North Carolina) and I wanted to get some feedback from any of you who

might be able to help. I have spoken with both a pediatric

ophthalmologist and plastic surgeon. I told them that I would want

them to work together depending on their areas of expertise when Paige

has her surgeries. However, the plastic surgeon was explaining that

he would also want to do a bone graft on Paige in the space where the

eye sits in the skull. He went on to explain that in unaffected

individuals, as they mature, the bone in the eye socket builds up and

as a result the eye socket gets smaller, allowing the eye to protrude

just enough to create the " fold " in the eyelid. In the case with

individuals with BPES, the eye socket in the skull remains enlarged

and therefore the eye sits further back in the skull. Has anyone else

ever heard of this?

Everything else that the doctors have said relating to her surgeries

are very much like what I had done twenty-five years ago. That was

the only thing that made me feel uncertain. Any feedback you have

would be appreciated.

Regards,