Re: Oh...My...God!!! I Can't Believe There Are Others JUST LIKE ME!

[Guest guest]

Hi Dannah You would never become a nuisance, ask away!! By the way where do you live? My name is Lucy and my husband Garry and I have a daughter called Holly who is the first in the family with BPES, just like you were! Holly was diagnosed at four months old and we were lucky enough to find this support group so it was fantastic help. Holly had her first surgery last year and is due two more over the next couple of years, I suppose over the years the surgery has adapted and evolved with experience etc. So glad you found us Take care Lucy Hampshire, UKdannah_banana16 <danabanana16@...> wrote: Yesterday, I accidentally came across a website that led me to this group and the discovery that after 50 years I am not only NOT ALONE, but I have a name for the eye disfigurement I was born with, and a reason for my POF (I'm a woman, obviously)! I have never, ever known or even seen another person who looked anything like me in my entire life (other than the banjo playing hillbilly boy in the old movie, "Deliverance" and even that was iffy)! I was in tears and felt like I had found long, lost family members! Isn't that weird!? I called my now elderly mother right away and told her all about it. She was shocked, of course, but so pleased for me. She, too, had no idea that there was an actual name for this condition or that it was even related to

genetics as we don't have any history of it in our family. My parents and I were always told that I was born with "undeveloped eyelids" or some form of Ptosis. Back in 1956 I guess it was a pretty unusual birth defect -- at least it was for my doctors! I endured 10 surgeries over 10 years and lost the sight in one eye due to complications. From looking at some of the pictures in your photo albums I guess BPES can take various severities, and it also looks like the medical field has truly improved it's treatment of it. I, myself, have much scarring and there is an obvious differentiation between each eye. I'm also severely nearsighted in my sighted eye. But I'm very grateful with what I have. I have so many questions that I hope I don't become a nuisance in this group! Anyway, I'm just so thankful that you're here and I look forward to my time spent with you. God Bless -- Dannah

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[Guest guest]

Welcome to the family!.... My daugther is theonly on either side of the family love her to death... she my everything ... I also thought the same as you did in the moive*( (other than the banjo playing hillbilly boy in the old movie, "Deliverance" and even that was iffy)! it makes me wonder.. i pasued the moive several times... hmmm.. glad you found us.... welcome~ dannah_banana16 <danabanana16@...> wrote: Yesterday, I accidentally came across a website that led me to this group and the discovery that after 50 years I am not only NOT ALONE, but I have a name for the eye disfigurement I was born with, and a reason for my POF (I'm a woman, obviously)! I have never, ever known or even seen another person who looked anything like me in my entire life (other than the banjo playing hillbilly boy in the old movie, "Deliverance" and even that was iffy)! I was in tears and felt like I had found long, lost family members! Isn't that weird!? I called my now elderly mother right away and told her all about it. She was shocked, of course, but so pleased for me. She, too, had no idea that there was an actual name for this condition or that it was even related to genetics as we don't have any history of it in our

family. My parents and I were always told that I was born with "undeveloped eyelids" or some form of Ptosis. Back in 1956 I guess it was a pretty unusual birth defect -- at least it was for my doctors! I endured 10 surgeries over 10 years and lost the sight in one eye due to complications. From looking at some of the pictures in your photo albums I guess BPES can take various severities, and it also looks like the medical field has truly improved it's treatment of it. I, myself, have much scarring and there is an obvious differentiation between each eye. I'm also severely nearsighted in my sighted eye. But I'm very grateful with what I have. I have so many questions that I hope I don't become a nuisance in this group! Anyway, I'm just so thankful that you're here and I look forward to my time spent with you. God Bless -- Dannah

Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Games.

[Guest guest]

Hi Dannah,

Welcome.

dannah_banana16 wrote:

> Yesterday, I accidentally came across a website that led me to this

> group and the discovery that after 50 years I am not only NOT ALONE, but

> I have a name for the eye disfigurement I was born with, and a reason

> for my POF (I'm a woman, obviously)! I have never, ever known or even

> seen another person who looked anything like me in my entire life

Your story is *SO* familiar to a lot of people here. I have also never

(in 46 years) accidentally met anyone else with BPES, although I've

deliberately met several. It's sufficiently rare that even

ophthalmologists usually never see a case in their lives.

> (other

> than the banjo playing hillbilly boy in the old movie, " Deliverance " and

> even that was iffy)!

If you want to see a movie actor with genuine BPES, watch 'The Queen'

and 'The Fifth Element' (same dude in each).

> I was in tears and felt like I had found long, lost

> family members! Isn't that weird!? I called my now elderly mother right

> away and told her all about it. She was shocked, of course, but so

> pleased for me. She, too, had no idea that there was an actual name for

> this condition or that it was even related to genetics as we don't have

> any history of it in our family.

All so familiar and normal. Sometimes BPES is inherited, sometimes its

spontaneous. I didn't know there was a name for it, either, until I got

my ophthalmic surgeon in a figurative headlock one day and made him

write down its name for me. Most medicos aren't particularly

forthcoming, information-wise, unfortunately.

> My parents and I were always told that

> I was born with " undeveloped eyelids " or some form of Ptosis. Back in

> 1956 I guess it was a pretty unusual birth defect -- at least it was for

> my doctors! I endured 10 surgeries over 10 years and lost the sight in

> one eye due to complications.

In our day, the techniques to repair BPES were still being worked out,

and were only known to a gifted few. Too many ophthalmic surgeons were

keen to have a go at it, even though unqualified. You seem to have

gotten the proverbial rough end of the pineapple in that regard (excuse

my Australian vernacular). My early surgeons also tried their hand, but

I was lucky and survived their ham-fisted tinkerings relatively unscathed.

> From looking at some of the pictures in

> your photo albums I guess BPES can take various severities, and it also

> looks like the medical field has truly improved it's treatment of it.

All very true. For some folks it's painfully obvious; for others, it's

barely noticeable (e.g. my father and son). The basic techniques were

pretty much stable by the end of the 60s; we over-40s were the guinea

pigs. Even today, though, one needs to be careful in choosing a

competent surgeon.

> I have so many questions that I

> hope I don't become a nuisance in this group!

Never! Ask away, oh fellow BPES-enhanced-type person. We are here to

help. We've shared (some of) your pain; we know what it's like to be us.

Where are you located? BPES seems to be quite evenly spread.

Rob W

Oz

[Guest guest]

Hi Dannah

Welcome to the group. My name is and my daughter, Kirsten (4),

is the first in our family with BPES. I rely on the support and

advice from this group alot. I look forward to hearing all about you.

Regards

Parsons

Harrogate (UK)

>

> Yesterday, I accidentally came across a website that led me to this

> group and the discovery that after 50 years I am not only NOT

ALONE, but

> I have a name for the eye disfigurement I was born with, and a

reason

> for my POF (I'm a woman, obviously)! I have never, ever known or

even

> seen another person who looked anything like me in my entire life

(other

> than the banjo playing hillbilly boy in the old

movie, " Deliverance " and

> even that was iffy)! I was in tears and felt like I had found

long, lost

> family members! Isn't that weird!? I called my now elderly mother

right

> away and told her all about it. She was shocked, of course, but so

> pleased for me. She, too, had no idea that there was an actual

name for

> this condition or that it was even related to genetics as we don't

have

> any history of it in our family. My parents and I were always told

that

> I was born with " undeveloped eyelids " or some form of Ptosis.

Back in

> 1956 I guess it was a pretty unusual birth defect -- at least it

was for

> my doctors! I endured 10 surgeries over 10 years and lost the

sight in

> one eye due to complications. From looking at some of the pictures

in

> your photo albums I guess BPES can take various severities, and it

also

> looks like the medical field has truly improved it's treatment of

it. I,

> myself, have much scarring and there is an obvious differentiation

> between each eye. I'm also severely nearsighted in my sighted eye.

But

> I'm very grateful with what I have. I have so many questions that

I

> hope I don't become a nuisance in this group! Anyway, I'm just so

> thankful that you're here and I look forward to my time spent with

you.

> God Bless -- Dannah

>

[Guest guest]

Hi Dannah. My name is Machaela and I recently found this group also. I

was EXTREMELY excited!! as my 2yr old daughter is the first in our

family and I had never seen any other cases of BPES. I was totally

overwhelmed by all the photos. I was really emotional. I cried and

cried! I felt all these mixed emotions and I finally felt

a 'connection'to something that I previously felt quite alone with. To

know that other people are going through the same sort of stuff just

blew me away!! I feel SO happy for you to have finally found this

discovery! I really loved hearing your words. So go ahead! Ask a

zillion questions!! and welcome welcome welcome!!!!!!

[Guest guest]

what part in the fifth element? curious i have the moive... and ddint see?Rob <r.watson@...> wrote: Hi Dannah,Welcome.dannah_banana16 wrote:> Yesterday, I accidentally came across a website that led me to this> group and the discovery that after 50 years I am not only NOT ALONE, but> I have a name for the eye disfigurement I was born with, and a reason> for my POF (I'm a woman, obviously)! I have never, ever known or even> seen another

person who looked anything like me in my entire lifeYour story is *SO* familiar to a lot of people here. I have also never (in 46 years) accidentally met anyone else with BPES, although I've deliberately met several. It's sufficiently rare that even ophthalmologists usually never see a case in their lives.> (other> than the banjo playing hillbilly boy in the old movie, "Deliverance" and> even that was iffy)!If you want to see a movie actor with genuine BPES, watch 'The Queen' and 'The Fifth Element' (same dude in each).> I was in tears and felt like I had found long, lost> family members! Isn't that weird!? I called my now elderly mother right> away and told her all about it. She was shocked, of course, but so> pleased for me. She, too, had no idea that there was an actual name for> this condition or that it was even related to genetics as we don't have> any history of it

in our family.All so familiar and normal. Sometimes BPES is inherited, sometimes its spontaneous. I didn't know there was a name for it, either, until I got my ophthalmic surgeon in a figurative headlock one day and made him write down its name for me. Most medicos aren't particularly forthcoming, information-wise, unfortunately.> My parents and I were always told that> I was born with "undeveloped eyelids" or some form of Ptosis. Back in> 1956 I guess it was a pretty unusual birth defect -- at least it was for> my doctors! I endured 10 surgeries over 10 years and lost the sight in> one eye due to complications.In our day, the techniques to repair BPES were still being worked out, and were only known to a gifted few. Too many ophthalmic surgeons were keen to have a go at it, even though unqualified. You seem to have gotten the proverbial rough end of the pineapple in that regard (excuse

my Australian vernacular). My early surgeons also tried their hand, but I was lucky and survived their ham-fisted tinkerings relatively unscathed.> From looking at some of the pictures in> your photo albums I guess BPES can take various severities, and it also> looks like the medical field has truly improved it's treatment of it.All very true. For some folks it's painfully obvious; for others, it's barely noticeable (e.g. my father and son). The basic techniques were pretty much stable by the end of the 60s; we over-40s were the guinea pigs. Even today, though, one needs to be careful in choosing a competent surgeon.> I have so many questions that I> hope I don't become a nuisance in this group!Never! Ask away, oh fellow BPES-enhanced-type person. We are here to help. We've shared (some of) your pain; we know what it's like to be us.Where are you located? BPES seems to be

quite evenly spread.Rob WOz

Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Games.

[Guest guest]

Hi Rob, , Dawn, Lucy, and Machaela!

Thank you all for such warm welcomes!!! I'm pleased to meet you all.

Some of you wanted to know where I live; I live in the beautiful

state of Oregon, USA -- born and raised. I hope to download a photo

or two of myself soon, both as a child and an adult. I'm not too

computer savvy so we'll see how that goes . Right now, I'm very

hurriedly trying to get ready to leave (Saturday) for a 10-day trip

to Europe with my lovely 14 year-old niece, so I'll do more

communicating when I return. Again, thanks so very much for making me

feel so at home! GB - Dannah

> > Yesterday, I accidentally came across a website that led me to

this

> > group and the discovery that after 50 years I am not only NOT

ALONE, but

> > I have a name for the eye disfigurement I was born with, and a

reason

> > for my POF (I'm a woman, obviously)! I have never, ever known or

even

> > seen another person who looked anything like me in my entire life

>

> Your story is *SO* familiar to a lot of people here. I have also

never

> (in 46 years) accidentally met anyone else with BPES, although I've

> deliberately met several. It's sufficiently rare that even

> ophthalmologists usually never see a case in their lives.

>

> > (other

> > than the banjo playing hillbilly boy in the old

movie, " Deliverance " and

> > even that was iffy)!

>

> If you want to see a movie actor with genuine BPES, watch 'The

Queen'

> and 'The Fifth Element' (same dude in each).

>

> > I was in tears and felt like I had found long, lost

> > family members! Isn't that weird!? I called my now elderly mother

right

> > away and told her all about it. She was shocked, of course, but

so

> > pleased for me. She, too, had no idea that there was an actual

name for

> > this condition or that it was even related to genetics as we

don't have

> > any history of it in our family.

>

> All so familiar and normal. Sometimes BPES is inherited, sometimes

its

> spontaneous. I didn't know there was a name for it, either, until I

got

> my ophthalmic surgeon in a figurative headlock one day and made him

> write down its name for me. Most medicos aren't particularly

> forthcoming, information-wise, unfortunately.

>

> > My parents and I were always told that

> > I was born with " undeveloped eyelids " or some form of Ptosis.

Back in

> > 1956 I guess it was a pretty unusual birth defect -- at least it

was for

> > my doctors! I endured 10 surgeries over 10 years and lost the

sight in

> > one eye due to complications.

>

> In our day, the techniques to repair BPES were still being worked

out,

> and were only known to a gifted few. Too many ophthalmic surgeons

were

> keen to have a go at it, even though unqualified. You seem to have

> gotten the proverbial rough end of the pineapple in that regard

(excuse

> my Australian vernacular). My early surgeons also tried their hand,

but

> I was lucky and survived their ham-fisted tinkerings relatively

unscathed.

>

> > From looking at some of the pictures in

> > your photo albums I guess BPES can take various severities, and

it also

> > looks like the medical field has truly improved it's treatment of

it.

>

> All very true. For some folks it's painfully obvious; for others,

it's

> barely noticeable (e.g. my father and son). The basic techniques

were

> pretty much stable by the end of the 60s; we over-40s were the

guinea

> pigs. Even today, though, one needs to be careful in choosing a

> competent surgeon.

>

> > I have so many questions that I

> > hope I don't become a nuisance in this group!

>

> Never! Ask away, oh fellow BPES-enhanced-type person. We are here

to

> help. We've shared (some of) your pain; we know what it's like to

be us.

>

> Where are you located? BPES seems to be quite evenly spread.

>

> Rob W

> Oz

>

[Guest guest]

Hi Dannah, welcome welcome, its Clare Teale, Herts UK here. You will find this excellent website a source of information and support. I know I have. Its lovely to have you on board. Clare dannah_banana16 <danabanana16@...> wrote: Yesterday, I accidentally came across a website that led me to this group and the discovery that after 50 years I am not only NOT ALONE, but I have a name for the eye disfigurement I was born

with, and a reason for my POF (I'm a woman, obviously)! I have never, ever known or even seen another person who looked anything like me in my entire life (other than the banjo playing hillbilly boy in the old movie, "Deliverance" and even that was iffy)! I was in tears and felt like I had found long, lost family members! Isn't that weird!? I called my now elderly mother right away and told her all about it. She was shocked, of course, but so pleased for me. She, too, had no idea that there was an actual name for this condition or that it was even related to genetics as we don't have any history of it in our family. My parents and I were always told that I was born with "undeveloped eyelids" or some form of Ptosis. Back in 1956 I guess it was a pretty unusual birth defect -- at least it was for my doctors! I endured 10 surgeries over 10 years and lost the sight in one eye due to complications. From looking at some of the pictures

in your photo albums I guess BPES can take various severities, and it also looks like the medical field has truly improved it's treatment of it. I, myself, have much scarring and there is an obvious differentiation between each eye. I'm also severely nearsighted in my sighted eye. But I'm very grateful with what I have. I have so many questions that I hope I don't become a nuisance in this group! Anyway, I'm just so thankful that you're here and I look forward to my time spent with you. God Bless -- Dannah Clare Teale Talking Spirit 07776

481481 www.talking-spirit.moonfruit.com

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[Guest guest]

DAWN-MARIE ANDERSON wrote:

> what part in the fifth element? curious i have the moive... and ddint see?

The actor's name is Tim McMullan, and he looks like this:

http://www.nationaltheatre.org.uk/?lid=21625. (IMDB entry here:

http://www.imdb.com/name/nm0573406/ - no photo, though)

In T5E, he plays a radar-watching (I vaguely recall?) " scientist's aide "

(radar technician?), appearing nearish to the end. He says " They're

coming " or words to that effect. At the very end, when folks are

standing around on a podium for some reason, he can also be seen

directly behind the two guys who are making speeches.

There were a bunch of forum posts on this subject in January, you might

want to look them up. Shireen wrote to Tim & got a reply.

Rob W

>

> Rob <r.watson@...> wrote: Hi Dannah,

>

> Welcome.

>

> dannah_banana16 wrote:

>

>> (other

>> than the banjo playing hillbilly boy in the old movie, " Deliverance " and

>> even that was iffy)!

>

> If you want to see a movie actor with genuine BPES, watch 'The Queen'

> and 'The Fifth Element' (same dude in each).

>

>

> Rob W

[Guest guest]

Thank you!Rob <r.watson@...> wrote: DAWN-MARIE ANDERSON wrote:> what part in the fifth element? curious i have the moive... and ddint see?The actor's name is Tim McMullan, and he looks like this: http://www.nationaltheatre.org.uk/?lid=21625. (IMDB entry here: http://www.imdb.com/name/nm0573406/ - no photo, though)In T5E, he plays a radar-watching

(I vaguely recall?) "scientist's aide" (radar technician?), appearing nearish to the end. He says "They're coming" or words to that effect. At the very end, when folks are standing around on a podium for some reason, he can also be seen directly behind the two guys who are making speeches.There were a bunch of forum posts on this subject in January, you might want to look them up. Shireen wrote to Tim & got a reply.Rob W> > Rob <r.watsonbigpond (DOT) net.au> wrote: Hi Dannah,> > Welcome.> > dannah_banana16 wrote:> >> (other>> than the banjo playing hillbilly boy in the old movie, "Deliverance" and>> even that was iffy)!> > If you want to see a movie actor with genuine BPES, watch 'The Queen' > and 'The Fifth Element' (same dude in each).> > > Rob

W

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