Re: New member - new photos

[Guest guest]

Hi , welcome to this group! What a lovely time I`ve just had

reading your post & checking out the pics! Thankyou for the time

you`ve spent to do this - I know lots of people here are goin gto be

greatly encouraged when they read it & see your pics. They are great

& you look GORGEOUS. (I`m certain I have photos of my own daughter

with BPES that could make you two look like twins! I`ll have to fish

them out sometime but I`m not that quick with the technology side of

things - not all my photos from years ago are digital.) is now

19yrs old & has handled the whole `strange eyes` question very well

during her life. She has also had 2 surgeries 7 could ahve 1 more if

she so chooses.

I think your description of `unique eyes` is absolutely accurate &

its obvious you have a healthy self image (good on you mum). Are you

the only one/first one in your family or is there a history?

It must be quite a shock tho` for parents without BPES to have a

child with it, as it would have been for my own. I have never asked

my folks what it was like for them.......maybe I should sometime.

That was a long time ago & not ever talked about till I grew up -

hence I felt `different` so its really important to discuss these

things with your children but to point out how all people have

different characteristics - thats what makes us `unique`.

Anyway, this is getting long. Just wanted to say all the very best

with your studies & thanx again for your `message of hope` - it

certainly will be that for many!

Bye

Maree

>

>

> Hello everyone, I'm . I'm 21 years old and I have BPES. I

never realized there were so many other people out there who have

eyes just like me! My mom just told me about this group and I'm

pretty excited about it. Since a lot of people in this group seem to

be curious parents who don't know what to expect having a child with

BPES, I'd like to share what my experiences have been.

>

> For the majority of my life, having unique eyes hasn't even been an

issue. I wasn't brought up any differently because of it, and

therefore I had no reason to believe I was different than anyone

else. I did have two surgeries (at ages 2 1/2 and 6), and I only

remember the second one. I don't have any traumatic memories or

anything of that nature from it. I got a walkman as a gift, that's

really what I remember most. And I've always thought that it was

pretty neat that I have a scar on my leg from eye surgery. That one

baffles people! Those who are hesitant about surgery though, I would

just like to say that just from my own personal experiences, it's not

really a huge deal. If it can eliminate some of the chances of the

dreaded " what's wrong with your eyes " question, then I would

seriously consider it. That is the only thing that I have really

struggled with at all regarding my eyes - I am sensitive to that

question. I recently started substitute teaching elementary

students, and I have gotten asked that exact question from my

students at least eight times in two weeks. Aside from a remark here

or there, I haven't really been asked that question since back when I

was IN elementary school, and I would really be okay if no one ever

asked me that question ever again. But it is a reality that people

seem to feel the need to ask it, so I guess I would just say that

that is really the only negative thing that I have encountered having

BPES. I was complaining about the questions to my mother when I was

visiting home this past weekend, and she brought up a very good

point. She asked, " has having eyes like this prevented you from doing

anything in your life? " The answer is, of course not. I'm a senior

in college right now, a few months away from student teaching and I

will graduate in April with a 3.80 GPA. I studied abroad in Spain

for half a year, because I'm a Spanish major. I was very active in

high school with the pom-pon squad and band. I've never had a

problem making friends or fitting in, and I would have to say that

I'm pretty " normal. " So I guess I would just like to offer a message

of hope to all those who are worrying about the implications of BPES

right now.

>

>

>

> I have uploaded a collection of photos entitled " - newborn to

age 21 " and I tried to show a progression of my eyes throughout my

life. I do jump from age 8 to age 18, but my eyes didn't change a

whole lot in those years.

>

>

>

> I encourage anyone who has any questions at all to contact me.

>

>

>

> McManus

>

[Guest guest]

Thanks for your welcome! I am glad that you enjoyed my pictures. I

actually enjoyed posting them; it's fun to look at how I've grown up

throughout the years. As for your question, I am the first person

in my entire family (and only one) to ever have BPES. I'm not

really sure how my parents reacted, but whatever they did worked. I

think they just realize that life throws everyone a few curveballs,

but you just have to deal with them and move on. I look forward to

future correspondance in this group, and I hope to someday see

pictures of !

> >

> >

> > Hello everyone, I'm . I'm 21 years old and I have BPES. I

> never realized there were so many other people out there who have

> eyes just like me! My mom just told me about this group and I'm

> pretty excited about it. Since a lot of people in this group seem

to

> be curious parents who don't know what to expect having a child

with

> BPES, I'd like to share what my experiences have been.

> >

> > For the majority of my life, having unique eyes hasn't even been

an

> issue. I wasn't brought up any differently because of it, and

> therefore I had no reason to believe I was different than anyone

> else. I did have two surgeries (at ages 2 1/2 and 6), and I only

> remember the second one. I don't have any traumatic memories or

> anything of that nature from it. I got a walkman as a gift,

that's

> really what I remember most. And I've always thought that it was

> pretty neat that I have a scar on my leg from eye surgery. That

one

> baffles people! Those who are hesitant about surgery though, I

would

> just like to say that just from my own personal experiences, it's

not

> really a huge deal. If it can eliminate some of the chances of

the

> dreaded " what's wrong with your eyes " question, then I would

> seriously consider it. That is the only thing that I have really

> struggled with at all regarding my eyes - I am sensitive to that

> question. I recently started substitute teaching elementary

> students, and I have gotten asked that exact question from my

> students at least eight times in two weeks. Aside from a remark

here

> or there, I haven't really been asked that question since back

when I

> was IN elementary school, and I would really be okay if no one

ever

> asked me that question ever again. But it is a reality that

people

> seem to feel the need to ask it, so I guess I would just say that

> that is really the only negative thing that I have encountered

having

> BPES. I was complaining about the questions to my mother when I

was

> visiting home this past weekend, and she brought up a very good

> point. She asked, " has having eyes like this prevented you from

doing

> anything in your life? " The answer is, of course not. I'm a

senior

> in college right now, a few months away from student teaching and

I

> will graduate in April with a 3.80 GPA. I studied abroad in Spain

> for half a year, because I'm a Spanish major. I was very active

in

> high school with the pom-pon squad and band. I've never had a

> problem making friends or fitting in, and I would have to say that

> I'm pretty " normal. " So I guess I would just like to offer a

message

> of hope to all those who are worrying about the implications of

BPES

> right now.

> >

> >

> >

> > I have uploaded a collection of photos entitled " - newborn

to

> age 21 " and I tried to show a progression of my eyes throughout my

> life. I do jump from age 8 to age 18, but my eyes didn't change a

> whole lot in those years.

> >

> >

> >

> > I encourage anyone who has any questions at all to contact me.

> >

> >

> >

> > McManus

> >

>

[Guest guest]

Hi again ,

Well there IS a pic of which is right near the end - its not

in a folder, just on its own, titled Maree, Ethan . Posted by

Ethans mum Leeann last year when we visited them - he is the only

other person I have met with BPES other than my daughter so it was

quite a time.Will do some more tho`.

I do have one more question though - do you know if you are Type 1 or

2 or doesn`t it matter to you?

OK Bye

Maree

> > >

> > >

> > > Hello everyone, I'm . I'm 21 years old and I have BPES. I

> > never realized there were so many other people out there who have

> > eyes just like me! My mom just told me about this group and I'm

> > pretty excited about it. Since a lot of people in this group

seem

> to

> > be curious parents who don't know what to expect having a child

> with

> > BPES, I'd like to share what my experiences have been.

> > >

> > > For the majority of my life, having unique eyes hasn't even

been

> an

> > issue. I wasn't brought up any differently because of it, and

> > therefore I had no reason to believe I was different than anyone

> > else. I did have two surgeries (at ages 2 1/2 and 6), and I only

> > remember the second one. I don't have any traumatic memories or

> > anything of that nature from it. I got a walkman as a gift,

> that's

> > really what I remember most. And I've always thought that it was

> > pretty neat that I have a scar on my leg from eye surgery. That

> one

> > baffles people! Those who are hesitant about surgery though, I

> would

> > just like to say that just from my own personal experiences, it's

> not

> > really a huge deal. If it can eliminate some of the chances of

> the

> > dreaded " what's wrong with your eyes " question, then I would

> > seriously consider it. That is the only thing that I have really

> > struggled with at all regarding my eyes - I am sensitive to that

> > question. I recently started substitute teaching elementary

> > students, and I have gotten asked that exact question from my

> > students at least eight times in two weeks. Aside from a remark

> here

> > or there, I haven't really been asked that question since back

> when I

> > was IN elementary school, and I would really be okay if no one

> ever

> > asked me that question ever again. But it is a reality that

> people

> > seem to feel the need to ask it, so I guess I would just say that

> > that is really the only negative thing that I have encountered

> having

> > BPES. I was complaining about the questions to my mother when I

> was

> > visiting home this past weekend, and she brought up a very good

> > point. She asked, " has having eyes like this prevented you from

> doing

> > anything in your life? " The answer is, of course not. I'm a

> senior

> > in college right now, a few months away from student teaching and

> I

> > will graduate in April with a 3.80 GPA. I studied abroad in

Spain

> > for half a year, because I'm a Spanish major. I was very active

> in

> > high school with the pom-pon squad and band. I've never had a

> > problem making friends or fitting in, and I would have to say

that

> > I'm pretty " normal. " So I guess I would just like to offer a

> message

> > of hope to all those who are worrying about the implications of

> BPES

> > right now.

> > >

> > >

> > >

> > > I have uploaded a collection of photos entitled " -

newborn

> to

> > age 21 " and I tried to show a progression of my eyes throughout

my

> > life. I do jump from age 8 to age 18, but my eyes didn't change

a

> > whole lot in those years.

> > >

> > >

> > >

> > > I encourage anyone who has any questions at all to contact me.

> > >

> > >

> > >

> > > McManus

> > >

> >

>

[Guest guest]

Hi Maree again,

I did find the picture, and it's lovely! I don't know if I am type

I or II. I actually didn't find out about the infertility

associated with BPES until a few days ago - my mom knew for about a

year but didn't quite know how to bring it up. I am still trying to

digest the information and decide if I feel the need to find out

what type I am. I had always thought that getting married and

having a family was in my future, but since I don't even have a

boyfriend right now, I'm just not worrying for the time being. If

months go by and I'm still really curious, I may try to find out.

But I'm 21, and no where in the direction of having children in the

next few years, so I am still trying to figure out what to do.

Bye,

> > > >

> > > >

> > > > Hello everyone, I'm . I'm 21 years old and I have

BPES. I

> > > never realized there were so many other people out there who

have

> > > eyes just like me! My mom just told me about this group and

I'm

> > > pretty excited about it. Since a lot of people in this group

> seem

> > to

> > > be curious parents who don't know what to expect having a

child

> > with

> > > BPES, I'd like to share what my experiences have been.

> > > >

> > > > For the majority of my life, having unique eyes hasn't even

> been

> > an

> > > issue. I wasn't brought up any differently because of it, and

> > > therefore I had no reason to believe I was different than

anyone

> > > else. I did have two surgeries (at ages 2 1/2 and 6), and I

only

> > > remember the second one. I don't have any traumatic memories

or

> > > anything of that nature from it. I got a walkman as a gift,

> > that's

> > > really what I remember most. And I've always thought that it

was

> > > pretty neat that I have a scar on my leg from eye surgery.

That

> > one

> > > baffles people! Those who are hesitant about surgery though,

I

> > would

> > > just like to say that just from my own personal experiences,

it's

> > not

> > > really a huge deal. If it can eliminate some of the chances

of

> > the

> > > dreaded " what's wrong with your eyes " question, then I would

> > > seriously consider it. That is the only thing that I have

really

> > > struggled with at all regarding my eyes - I am sensitive to

that

> > > question. I recently started substitute teaching elementary

> > > students, and I have gotten asked that exact question from my

> > > students at least eight times in two weeks. Aside from a

remark

> > here

> > > or there, I haven't really been asked that question since back

> > when I

> > > was IN elementary school, and I would really be okay if no one

> > ever

> > > asked me that question ever again. But it is a reality that

> > people

> > > seem to feel the need to ask it, so I guess I would just say

that

> > > that is really the only negative thing that I have encountered

> > having

> > > BPES. I was complaining about the questions to my mother when

I

> > was

> > > visiting home this past weekend, and she brought up a very

good

> > > point. She asked, " has having eyes like this prevented you

from

> > doing

> > > anything in your life? " The answer is, of course not. I'm a

> > senior

> > > in college right now, a few months away from student teaching

and

> > I

> > > will graduate in April with a 3.80 GPA. I studied abroad in

> Spain

> > > for half a year, because I'm a Spanish major. I was very

active

> > in

> > > high school with the pom-pon squad and band. I've never had a

> > > problem making friends or fitting in, and I would have to say

> that

> > > I'm pretty " normal. " So I guess I would just like to offer a

> > message

> > > of hope to all those who are worrying about the implications

of

> > BPES

> > > right now.

> > > >

> > > >

> > > >

> > > > I have uploaded a collection of photos entitled " -

> newborn

> > to

> > > age 21 " and I tried to show a progression of my eyes

throughout

> my

> > > life. I do jump from age 8 to age 18, but my eyes didn't

change

> a

> > > whole lot in those years.

> > > >

> > > >

> > > >

> > > > I encourage anyone who has any questions at all to contact

me.

> > > >

> > > >

> > > >

> > > > McManus

> > > >

> > >

> >

>

[Guest guest]

,

Yes big stuff to cope with really at your age - not sure how I would

have handled it at that age - actually probably the same - life was

for living & living in the present! But when I did get married it was

some years before we decided to try for a family & then we only

managed the one before my ovaries failed. Had we known sooner about

the link with BPES we might have started earlier. But she is an

absolute joy to us nonetheless........

I`m sure you will know if & when you want to know what type you are -

in the meantime make the most of every day & live life to the

fullest......

Bye Maree

> > > > >

> > > > >

> > > > > Hello everyone, I'm . I'm 21 years old and I have

> BPES. I

> > > > never realized there were so many other people out there who

> have

> > > > eyes just like me! My mom just told me about this group and

> I'm

> > > > pretty excited about it. Since a lot of people in this group

> > seem

> > > to

> > > > be curious parents who don't know what to expect having a

> child

> > > with

> > > > BPES, I'd like to share what my experiences have been.

> > > > >

> > > > > For the majority of my life, having unique eyes hasn't even

> > been

> > > an

> > > > issue. I wasn't brought up any differently because of it,

and

> > > > therefore I had no reason to believe I was different than

> anyone

> > > > else. I did have two surgeries (at ages 2 1/2 and 6), and I

> only

> > > > remember the second one. I don't have any traumatic memories

> or

> > > > anything of that nature from it. I got a walkman as a gift,

> > > that's

> > > > really what I remember most. And I've always thought that it

> was

> > > > pretty neat that I have a scar on my leg from eye surgery.

> That

> > > one

> > > > baffles people! Those who are hesitant about surgery though,

> I

> > > would

> > > > just like to say that just from my own personal experiences,

> it's

> > > not

> > > > really a huge deal. If it can eliminate some of the chances

> of

> > > the

> > > > dreaded " what's wrong with your eyes " question, then I would

> > > > seriously consider it. That is the only thing that I have

> really

> > > > struggled with at all regarding my eyes - I am sensitive to

> that

> > > > question. I recently started substitute teaching elementary

> > > > students, and I have gotten asked that exact question from my

> > > > students at least eight times in two weeks. Aside from a

> remark

> > > here

> > > > or there, I haven't really been asked that question since

back

> > > when I

> > > > was IN elementary school, and I would really be okay if no

one

> > > ever

> > > > asked me that question ever again. But it is a reality that

> > > people

> > > > seem to feel the need to ask it, so I guess I would just say

> that

> > > > that is really the only negative thing that I have

encountered

> > > having

> > > > BPES. I was complaining about the questions to my mother

when

> I

> > > was

> > > > visiting home this past weekend, and she brought up a very

> good

> > > > point. She asked, " has having eyes like this prevented you

> from

> > > doing

> > > > anything in your life? " The answer is, of course not. I'm a

> > > senior

> > > > in college right now, a few months away from student teaching

> and

> > > I

> > > > will graduate in April with a 3.80 GPA. I studied abroad in

> > Spain

> > > > for half a year, because I'm a Spanish major. I was very

> active

> > > in

> > > > high school with the pom-pon squad and band. I've never had

a

> > > > problem making friends or fitting in, and I would have to say

> > that

> > > > I'm pretty " normal. " So I guess I would just like to offer a

> > > message

> > > > of hope to all those who are worrying about the implications

> of

> > > BPES

> > > > right now.

> > > > >

> > > > >

> > > > >

> > > > > I have uploaded a collection of photos entitled " -

> > newborn

> > > to

> > > > age 21 " and I tried to show a progression of my eyes

> throughout

> > my

> > > > life. I do jump from age 8 to age 18, but my eyes didn't

> change

> > a

> > > > whole lot in those years.

> > > > >

> > > > >

> > > > >

> > > > > I encourage anyone who has any questions at all to contact

> me.

> > > > >

> > > > >

> > > > >

> > > > > McManus

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hello

I really appreciate all of the messages people have posted regarding

types 1 and 2 and genetic testing.

When I learned that my daughter can only be the type that I am, I

decided to pursue testing later this year. I look at it this way, if

I am Type 1, I still conceived a daughter at age 33 so that's not so

bad, and if I am Type 2 then I know Lily is also and any future

children as well.

When I first heard of this connection, Lily was a newborn, still

hadn't opened her eyes yet, and I thought TYPE 1 could mean she would

NEVER have kids, and I felt so sad, and like others here, I had more

than enough to cope with. But Then I thought she might be a wonderful

adoptive parent, (like our wonderful April and her husband!) or

perhaps a busy career woman not interested in motherhood, who knows?

Now that I have had some time to learn, and now that I know I could

be tested and find out for her and for others in my family, it's not

a bad idea.

Just my thoughts... thanks to all and have a good weekend

Beth

> > > > > >

> > > > > >

> > > > > > Hello everyone, I'm . I'm 21 years old and I have

> > BPES. I

> > > > > never realized there were so many other people out there

who

> > have

> > > > > eyes just like me! My mom just told me about this group

and

> > I'm

> > > > > pretty excited about it. Since a lot of people in this

group

> > > seem

> > > > to

> > > > > be curious parents who don't know what to expect having a

> > child

> > > > with

> > > > > BPES, I'd like to share what my experiences have been.

> > > > > >

> > > > > > For the majority of my life, having unique eyes hasn't

even

> > > been

> > > > an

> > > > > issue. I wasn't brought up any differently because of it,

> and

> > > > > therefore I had no reason to believe I was different than

> > anyone

> > > > > else. I did have two surgeries (at ages 2 1/2 and 6), and

I

> > only

> > > > > remember the second one. I don't have any traumatic

memories

> > or

> > > > > anything of that nature from it. I got a walkman as a

gift,

> > > > that's

> > > > > really what I remember most. And I've always thought that

it

> > was

> > > > > pretty neat that I have a scar on my leg from eye surgery.

> > That

> > > > one

> > > > > baffles people! Those who are hesitant about surgery

though,

> > I

> > > > would

> > > > > just like to say that just from my own personal

experiences,

> > it's

> > > > not

> > > > > really a huge deal. If it can eliminate some of the

chances

> > of

> > > > the

> > > > > dreaded " what's wrong with your eyes " question, then I

would

> > > > > seriously consider it. That is the only thing that I have

> > really

> > > > > struggled with at all regarding my eyes - I am sensitive

to

> > that

> > > > > question. I recently started substitute teaching

elementary

> > > > > students, and I have gotten asked that exact question from

my

> > > > > students at least eight times in two weeks. Aside from a

> > remark

> > > > here

> > > > > or there, I haven't really been asked that question since

> back

> > > > when I

> > > > > was IN elementary school, and I would really be okay if no

> one

> > > > ever

> > > > > asked me that question ever again. But it is a reality

that

> > > > people

> > > > > seem to feel the need to ask it, so I guess I would just

say

> > that

> > > > > that is really the only negative thing that I have

> encountered

> > > > having

> > > > > BPES. I was complaining about the questions to my mother

> when

> > I

> > > > was

> > > > > visiting home this past weekend, and she brought up a very

> > good

> > > > > point. She asked, " has having eyes like this prevented you

> > from

> > > > doing

> > > > > anything in your life? " The answer is, of course not. I'm

a

> > > > senior

> > > > > in college right now, a few months away from student

teaching

> > and

> > > > I

> > > > > will graduate in April with a 3.80 GPA. I studied abroad

in

> > > Spain

> > > > > for half a year, because I'm a Spanish major. I was very

> > active

> > > > in

> > > > > high school with the pom-pon squad and band. I've never

had

> a

> > > > > problem making friends or fitting in, and I would have to

say

> > > that

> > > > > I'm pretty " normal. " So I guess I would just like to offer

a

> > > > message

> > > > > of hope to all those who are worrying about the

implications

> > of

> > > > BPES

> > > > > right now.

> > > > > >

> > > > > >

> > > > > >

> > > > > > I have uploaded a collection of photos entitled " -

> > > newborn

> > > > to

> > > > > age 21 " and I tried to show a progression of my eyes

> > throughout

> > > my

> > > > > life. I do jump from age 8 to age 18, but my eyes didn't

> > change

> > > a

> > > > > whole lot in those years.

> > > > > >

> > > > > >

> > > > > >

> > > > > > I encourage anyone who has any questions at all to

contact

> > me.

> > > > > >

> > > > > >

> > > > > >

> > > > > > McManus

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

,

I sure enjoyed reading your story. I looked at all your pictures, what a beautiful girl you are! My baby girl is Malenah Mieritz, I'm not sure what i put her photos under, but she is in the photo gallery. we just adopted Malenah last November 30th. She's our little princess, she's from China, so we actually call her our little "Empress".

God bless friend!

karen

[Guest guest]

,

Your amazing.

God bless,

karen