a question

[Guest guest]

Why does everyone call him Mr. and not Dr. ?

> > >

> > > 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,

> > >

> > >

> >

>