RE: A rose by any other name

[Guest guest]

Thanks, Lenny. One of those might work....However, I'm wondering--since never before in history have children been consistently injected with mercury, maybe this calls for an entirely new name? It's a whole new type of exposure and resulting phenomenon than the other terms were created to describe.

I'd go for just about anything, though, that calls a spade a spade. My personal favorite is still Injected Mercury Syndrome, even if only as the nickname for something more scientific-sounding. Your spell checker will like it, too.....

Rita

Rita,Regarding your search for a better word for autism, here are threecandidates:acrodynia "ak-row-die-nee-ah"mercurialismhydrargyrism or hydrargyria "hi-drar-guy-ree-ah" or"hi-drar-guy-ree-are" for those from the UK or Massachusetts(Webster's 3rd New)A shorthand for hydrargyrism could be hygism All mean mercury poisoning. hydrargyria seems to be the one used incontemporary medical speak (and is my personal preference). My wordspell checker hates all four.Lenny

[Guest guest]

Hi Rita, This is Maurine. What's the new name for?

Going to Atlanta Sunday for Safe Minds dinner where Kirby will be. I am looking forward to meeting him. MM

Re: A Rose by any other name

Thanks, Lenny. One of those might work....However, I'm wondering--since never before in history have children been consistently injected with mercury, maybe this calls for an entirely new name? It's a whole new type of exposure and resulting phenomenon than the other terms were created to describe.

I'd go for just about anything, though, that calls a spade a spade. My personal favorite is still Injected Mercury Syndrome, even if only as the nickname for something more scientific-sounding. Your spell checker will like it, too.....

Rita

Rita,Regarding your search for a better word for autism, here are threecandidates:acrodynia "ak-row-die-nee-ah"mercurialismhydrargyrism or hydrargyria "hi-drar-guy-ree-ah" or"hi-drar-guy-ree-are" for those from the UK or Massachusetts(Webster's 3rd New)A shorthand for hydrargyrism could be hygism All mean mercury poisoning. hydrargyria seems to be the one used incontemporary medical speak (and is my personal preference). My wordspell checker hates all four.Lenny

[Guest guest]

Hi, Maurine. Lenny and I were talking earlier today about finding a more meaningful term than "autism" to better indicate what happened to our kids. The A-word has a mysterious connotation to many people, and the affected kids have such widely varying characteristics--we were just thinking it would be better to use a term associated with mercury toxicity.

The Safe Minds event is going to be a lot of fun--have a great time!

Rita

Hi Rita, This is Maurine. What's the new name for?

Going to Atlanta Sunday for Safe Minds dinner where Kirby will be. I am looking forward to meeting him. MM

Re: A Rose by any other name

Thanks, Lenny. One of those might work....However, I'm wondering--since never before in history have children been consistently injected with mercury, maybe this calls for an entirely new name? It's a whole new type of exposure and resulting phenomenon than the other terms were created to describe.

I'd go for just about anything, though, that calls a spade a spade. My personal favorite is still Injected Mercury Syndrome, even if only as the nickname for something more scientific-sounding. Your spell checker will like it, too.....

Rita

Rita,Regarding your search for a better word for autism, here are threecandidates:acrodynia "ak-row-die-nee-ah"mercurialismhydrargyrism or hydrargyria "hi-drar-guy-ree-ah" or"hi-drar-guy-ree-are" for those from the UK or Massachusetts(Webster's 3rd New)A shorthand for hydrargyrism could be hygism All mean mercury poisoning. hydrargyria seems to be the one used incontemporary medical speak (and is my personal preference). My wordspell checker hates all four.Lenny

[Guest guest]

I've had the same conversation with many. We will have succeeded in changing the disease model when the name changes.

Scientists are a large constituency for any name change. So selling something new has to have something in it for them.

From: EOHarm [mailto:EOHarm ] On Behalf Of RITA SHREFFLERSent: Friday, April 22, 2005 5:43 PMEOHarm Subject: Re: A Rose by any other name

Hi, Maurine. Lenny and I were talking earlier today about finding a more meaningful term than "autism" to better indicate what happened to our kids. The A-word has a mysterious connotation to many people, and the affected kids have such widely varying characteristics--we were just thinking it would be better to use a term associated with mercury toxicity.

The Safe Minds event is going to be a lot of fun--have a great time!

Rita

Hi Rita, This is Maurine. What's the new name for?

Going to Atlanta Sunday for Safe Minds dinner where Kirby will be. I am looking forward to meeting him. MM

Re: A Rose by any other name

Thanks, Lenny. One of those might work....However, I'm wondering--since never before in history have children been consistently injected with mercury, maybe this calls for an entirely new name? It's a whole new type of exposure and resulting phenomenon than the other terms were created to describe.

I'd go for just about anything, though, that calls a spade a spade. My personal favorite is still Injected Mercury Syndrome, even if only as the nickname for something more scientific-sounding. Your spell checker will like it, too.....

Rita

Rita,Regarding your search for a better word for autism, here are threecandidates:acrodynia "ak-row-die-nee-ah"mercurialismhydrargyrism or hydrargyria "hi-drar-guy-ree-ah" or"hi-drar-guy-ree-are" for those from the UK or Massachusetts(Webster's 3rd New)A shorthand for hydrargyrism could be hygism All mean mercury poisoning. hydrargyria seems to be the one used incontemporary medical speak (and is my personal preference). My wordspell checker hates all four.LennyThis e-mail message may contain confidential and/or privileged information. If you are not an addressee or otherwise authorized to receive this message, you should not use, copy, disclose or take any action based on this e-mail or any information contained in the message. If you have received this material in error, please advise the sender immediately by reply e-mail and delete this message. Thank you.

[Guest guest]

I agree Mark, I think the problem will be in finding a name that everyone would agree with.

Jo Pike

Re: A Rose by any other name

Thanks, Lenny. One of those might work....However, I'm wondering--since never before in history have children been consistently injected with mercury, maybe this calls for an entirely new name? It's a whole new type of exposure and resulting phenomenon than the other terms were created to describe.

I'd go for just about anything, though, that calls a spade a spade. My personal favorite is still Injected Mercury Syndrome, even if only as the nickname for something more scientific-sounding. Your spell checker will like it, too.....

Rita

Rita,Regarding your search for a better word for autism, here are threecandidates:acrodynia "ak-row-die-nee-ah"mercurialismhydrargyrism or hydrargyria "hi-drar-guy-ree-ah" or"hi-drar-guy-ree-are" for those from the UK or Massachusetts(Webster's 3rd New)A shorthand for hydrargyrism could be hygism All mean mercury poisoning. hydrargyria seems to be the one used incontemporary medical speak (and is my personal preference). My wordspell checker hates all four.Lenny

This e-mail message may contain confidential and/or privileged information. If you are not an addressee or otherwise authorized to receive this message, you should not use, copy, disclose or take any action based on this e-mail or any information contained in the message. If you have received this material in error, please advise the sender immediately by reply e-mail and delete this message.

Thank you.

[Guest guest]

Lenny,

if we can't say it fast 3 times I could not warm up to it

It took me weeks to get Molybdenum down pat

Tami

A Rose by any other name

>

>

> Rita,

>

> Regarding your search for a better word for autism, here are three

> candidates:

>

> acrodynia " ak-row-die-nee-ah "

>

> mercurialism

>

> hydrargyrism or hydrargyria " hi-drar-guy-ree-ah " or

> " hi-drar-guy-ree-are " for those from the UK or Massachusetts

>

> (Webster's 3rd New)

>

> A shorthand for hydrargyrism could be hygism

>

> All mean mercury poisoning. hydrargyria seems to be the one used in

> contemporary medical speak (and is my personal preference). My word

> spell checker hates all four.

>

> Lenny

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Maurine,

Autism and Autism Spectrum Disorder isn't a good labelling system,

especially if what we are really taking about is mercury poisoning.

Autism dx is based on observation of behaviors, and that makes things

fuzzy. Also, there are likely other, additional factors at work,

perhaps pathology triggered by mercury acting as a catalyst. All

speculation, I am quick to add. The search for a better lable is

mostly a whimsical exercise at this point.

-Lenny

> Hi Rita, This is Maurine. What's the new name for?

> Going to Atlanta Sunday for Safe Minds dinner where Kirby will

be. I am looking forward to meeting him. MM

> Re: A Rose by any other name

>

>

> Thanks, Lenny. One of those might work....However, I'm

wondering--since never before in history have children been

consistently injected with mercury, maybe this calls for an entirely

new name? It's a whole new type of exposure and resulting phenomenon

than the other terms were created to describe.

>

> I'd go for just about anything, though, that calls a spade a

spade. My personal favorite is still Injected Mercury Syndrome, even

if only as the nickname for something more scientific-sounding. Your

spell checker will like it, too.....

>

> Rita

>

>

>

>

> Rita,

>

> Regarding your search for a better word for autism, here are three

> candidates:

>

> acrodynia " ak-row-die-nee-ah "

>

> mercurialism

>

> hydrargyrism or hydrargyria " hi-drar-guy-ree-ah " or

> " hi-drar-guy-ree-are " for those from the UK or Massachusetts

>

> (Webster's 3rd New)

>

> A shorthand for hydrargyrism could be hygism

>

> All mean mercury poisoning. hydrargyria seems to be the one used in

> contemporary medical speak (and is my personal preference). My word

> spell checker hates all four.

>

> Lenny

>

>

>

>

>

>

>

>

>

>

>

>

>

----------------------------------------------------------------------------

>

[Guest guest]

on 4/26/05 10:25 AM, Maurine Meleck at emaurine@... wrote:

> Thanks, Lenny. I like those kind of exercises.

> On an added note: had a major tantrum in the parking lot of Publix

> food store yesterday. I had to restrain him -he was trying to kick and bite

> me-and sat down on the pavement with him to so. Before long-3 police cars

> pulled up and about 15 people had gathered(all very kind people who were

> really trying to help). I remained calm as I always do after so many years

> of this, but with a big audience like that I couldn't help myself by telling

> everyone that this is what the government has done to our children-with a

> brief story of the vaccines(as best I could with screaming) I had

> some really interested people there-so I figure the tantrum wasn't for

> nothing. Maurine

omg- can i follow you around with a videocamera all day?

- in NY

[Guest guest]

Anytime. Maurine

Re: Re: A Rose by any other name

>

> on 4/26/05 10:25 AM, Maurine Meleck at emaurine@... wrote:

>

> > Thanks, Lenny. I like those kind of exercises.

> > On an added note: had a major tantrum in the parking lot of

Publix

> > food store yesterday. I had to restrain him -he was trying to kick and

bite

> > me-and sat down on the pavement with him to so. Before long-3 police

cars

> > pulled up and about 15 people had gathered(all very kind people who were

> > really trying to help). I remained calm as I always do after so many

years

> > of this, but with a big audience like that I couldn't help myself by

telling

> > everyone that this is what the government has done to our children-with

a

> > brief story of the vaccines(as best I could with screaming) I

had

> > some really interested people there-so I figure the tantrum wasn't for

> > nothing. Maurine

>

> omg- can i follow you around with a videocamera all day?

>

> - in NY

>

>

>

>

>

>

[Guest guest]

Lenny,

How about Traumatic Brain Injury? Or does that not fully explain the whole picture? These kids were healthy before the shots...Jenn

E. Brown

The New Jersey Chapter of The National Autism Association

www.naanj.org

Think Autism. Think Cure.

From: EOHarm [mailto:EOHarm ] On Behalf Of schaferatsprynetSent: Tuesday, April 26, 2005 1:23 AMEOHarm Subject: Re: A Rose by any other name

Hi Maurine,Autism and Autism Spectrum Disorder isn't a good labelling system,especially if what we are really taking about is mercury poisoning.Autism dx is based on observation of behaviors, and that makes thingsfuzzy. Also, there are likely other, additional factors at work,perhaps pathology triggered by mercury acting as a catalyst. Allspeculation, I am quick to add. The search for a better lable ismostly a whimsical exercise at this point.-Lenny> Hi Rita, This is Maurine. What's the new name for?> Going to Atlanta Sunday for Safe Minds dinner where Kirby willbe. I am looking forward to meeting him. MM> Re: A Rose by any other name> > > Thanks, Lenny. One of those might work....However, I'mwondering--since never before in history have children beenconsistently injected with mercury, maybe this calls for an entirelynew name? It's a whole new type of exposure and resulting phenomenonthan the other terms were created to describe.> > I'd go for just about anything, though, that calls a spade aspade. My personal favorite is still Injected Mercury Syndrome, evenif only as the nickname for something more scientific-sounding. Yourspell checker will like it, too.....> > Rita> > > > > Rita,> > Regarding your search for a better word for autism, here are three> candidates:> > acrodynia "ak-row-die-nee-ah"> > mercurialism> > hydrargyrism or hydrargyria "hi-drar-guy-ree-ah" or> "hi-drar-guy-ree-are" for those from the UK or Massachusetts> > (Webster's 3rd New)> > A shorthand for hydrargyrism could be hygism > > All mean mercury poisoning. hydrargyria seems to be the one used in> contemporary medical speak (and is my personal preference). My word> spell checker hates all four.> > Lenny> > > > > > > > > > > > >---------------------------------------------------------------------------->

[Guest guest]

I keep trying to think up a catchy abbreviation name (like AIDS). I

like using the A for acquired and then we need to add letters that

combine to make a pronouncable and memorable word that also

accurately

portrays our damaged children, but one that would be acceptable by a

large part of our community.

A for acquired

D for developmental

I for immunological

G for gastrointestinal

M for multisystem

H, HM, or HMP for heavy metal poisoning

I for iatrogenic

A for avoidable

N for neurological

M for mercurial

EC for early childhood

M for metabolic disarray

etc.....

Surely there's some good names in there if you recombine those

letters

enough times.

[Guest guest]

I keep trying to think up a catchy abbreviation name (like AIDS). I

like using the A for acquired and then we need to add letters that

combine to make a pronouncable and memorable word that also

accurately

portrays our damaged children, but one that would be acceptable by a

large part of our community.

A for acquired

D for developmental

I for immunological

G for gastrointestinal

M for multisystem

H, HM, or HMP for heavy metal poisoning

I for iatrogenic

A for avoidable

N for neurological

M for mercurial

EC for early childhood

M for metabolic disarray

etc.....

Surely there's some good names in there if you recombine those

letters

enough times.

[Guest guest]

Here are a few ideas for a new name....Parent's Worst Nightmare

Syndrome PWNS or Living He** not otherwise specified LH-NOS....

ok ok I'll stop.

K

> > Hi Rita, This is Maurine. What's the new name for?

> > Going to Atlanta Sunday for Safe Minds dinner where Kirby

will

> be. I am looking forward to meeting him. MM

> > Re: A Rose by any other name

> >

> >

> > Thanks, Lenny. One of those might work....However, I'm

> wondering--since never before in history have children been

> consistently injected with mercury, maybe this calls for an entirely

> new name? It's a whole new type of exposure and resulting

phenomenon

> than the other terms were created to describe.

> >

> > I'd go for just about anything, though, that calls a spade a

> spade. My personal favorite is still Injected Mercury Syndrome,

even

> if only as the nickname for something more scientific-sounding.

Your

> spell checker will like it, too.....

> >

> > Rita

> >

> >

> >

> >

> > Rita,

> >

> > Regarding your search for a better word for autism, here are

three

> > candidates:

> >

> > acrodynia " ak-row-die-nee-ah "

> >

> > mercurialism

> >

> > hydrargyrism or hydrargyria " hi-drar-guy-ree-ah " or

> > " hi-drar-guy-ree-are " for those from the UK or Massachusetts

> >

> > (Webster's 3rd New)

> >

> > A shorthand for hydrargyrism could be hygism

> >

> > All mean mercury poisoning. hydrargyria seems to be the one

used in

> > contemporary medical speak (and is my personal preference).

My word

> > spell checker hates all four.

> >

> > Lenny

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> --------------------------------------------------------------------

--------

> >

[Guest guest]

Here are a few ideas for a new name....Parent's Worst Nightmare

Syndrome PWNS or Living He** not otherwise specified LH-NOS....

ok ok I'll stop.

K

> > Hi Rita, This is Maurine. What's the new name for?

> > Going to Atlanta Sunday for Safe Minds dinner where Kirby

will

> be. I am looking forward to meeting him. MM

> > Re: A Rose by any other name

> >

> >

> > Thanks, Lenny. One of those might work....However, I'm

> wondering--since never before in history have children been

> consistently injected with mercury, maybe this calls for an entirely

> new name? It's a whole new type of exposure and resulting

phenomenon

> than the other terms were created to describe.

> >

> > I'd go for just about anything, though, that calls a spade a

> spade. My personal favorite is still Injected Mercury Syndrome,

even

> if only as the nickname for something more scientific-sounding.

Your

> spell checker will like it, too.....

> >

> > Rita

> >

> >

> >

> >

> > Rita,

> >

> > Regarding your search for a better word for autism, here are

three

> > candidates:

> >

> > acrodynia " ak-row-die-nee-ah "

> >

> > mercurialism

> >

> > hydrargyrism or hydrargyria " hi-drar-guy-ree-ah " or

> > " hi-drar-guy-ree-are " for those from the UK or Massachusetts

> >

> > (Webster's 3rd New)

> >

> > A shorthand for hydrargyrism could be hygism

> >

> > All mean mercury poisoning. hydrargyria seems to be the one

used in

> > contemporary medical speak (and is my personal preference).

My word

> > spell checker hates all four.

> >

> > Lenny

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> --------------------------------------------------------------------

--------

> >

[Guest guest]

A couple years ago I took my son into the post office and he got upset after the long wait. When we got to the counter he whacked me in the face and knocked my glasses off onto the floor. I recall the loud collective gasp of the bystanders.

Last year my son refused to go into the post office, preferring to sit in the car and play his Gameboy. When I returned minutes later to the locked car, he was out of his seatbelt crying and banging on windows -- to the concern of onlookers.

I've read about other parents who have made up business cards to hand to bystanders, to avoid explaining unpleasant details in front of the child.

Hokkanen

Minneapolis

Re: A Rose by any other name> >> >> > Thanks, Lenny. One of those might work....However, I'm> wondering--since never before in history have children been> consistently injected with mercury, maybe this calls for an entirely> new name? It's a whole new type of exposure and resulting phenomenon> than the other terms were created to describe.> >> > I'd go for just about anything, though, that calls a spade a> spade. My personal favorite is still Injected Mercury Syndrome, even> if only as the nickname for something more scientific-sounding. Your> spell checker will like it, too.....> >> > Rita> >> >> >> >> > Rita,> >> > Regarding your search for a better word for autism, here are three> > candidates:> >> > acrodynia "ak-row-die-nee-ah"> >> > mercurialism> >> > hydrargyrism or hydrargyria "hi-drar-guy-ree-ah" or> > "hi-drar-guy-ree-are" for those from the UK or Massachusetts> >> > (Webster's 3rd New)> >> > A shorthand for hydrargyrism could be hygism> >> > All mean mercury poisoning. hydrargyria seems to be the one used in> > contemporary medical speak (and is my personal preference). My word> > spell checker hates all four.> >> > Lenny> >> >> >> >> >> >> >> >> >> >> >> >> >> ----------------------------------------------------------------------------> >

[Guest guest]

there is a great t shirt that says "I have autism, what's your excuse" that helps in those situations. I got one for a girlfriend's son because whenever we went on vacation together, her son, 19 years old and alot bigger than her, would end up not wanting to get out of the ocean (to go back into the hotel) or had a fit in the grocery etc and would tantrum or hit his mom and someone would call the cops or people just stare at her and some do ask if they can help.

the wording for the cards varies but you can make it anything you want. I will paste some sample text below and you print it out on business card stock that you can buy anywhere.

My Child Has Autism...Autism interferes with the normal development of the brain in the areas of reasoning, social interaction and communication skills. Children and adults with autism typically have deficiencies in verbal and nonverbal communication, social interactions and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. They may exhibit repeated body movements (hand flapping, rocking) unusual responses to people or attachments to objects and resist any changes in routines. In some cases, aggressive and/or self-injurious behavior may be present.Autism is treatable. To find out how you can help, Call Unlocking Autism at 866-366-3361

Re: A Rose by any other name> >> >> > Thanks, Lenny. One of those might work....However, I'm> wondering--since never before in history have children been> consistently injected with mercury, maybe this calls for an entirely> new name? It's a whole new type of exposure and resulting phenomenon> than the other terms were created to describe.> >> > I'd go for just about anything, though, that calls a spade a> spade. My personal favorite is still Injected Mercury Syndrome, even> if only as the nickname for something more scientific-sounding. Your> spell checker will like it, too.....> >> > Rita> >> >> >> >> > Rita,> >> > Regarding your search for a better word for autism, here are three> > candidates:> >> > acrodynia "ak-row-die-nee-ah"> >> > mercurialism> >> > hydrargyrism or hydrargyria "hi-drar-guy-ree-ah" or> > "hi-drar-guy-ree-are" for those from the UK or Massachusetts> >> > (Webster's 3rd New)> >> > A shorthand for hydrargyrism could be hygism> >> > All mean mercury poisoning. hydrargyria seems to be the one used in> > contemporary medical speak (and is my personal preference). My word> > spell checker hates all four.> >> > Lenny> >> >> >> >> >> >> >> >> >> >> >> >> >> ----------------------------------------------------------------------------> >

[Guest guest]

I bought my son a shirt in the mens section in target that says "I didn't do it". He is actually wearing it today.

I got one for my daughter at JCPenneys that says "I do all my own stunts" (she's kinda clumsy)

Re: A Rose by any other name

> there is a great t shirt that says "I have autism, what's your excuse" Oh, I love it! Have to get one of those. Got my son a t shirt that says"whatever they said IT WASN'T ME"(for people who are quick to blame everything on the autistic kid)Laurie

[Guest guest]

I found one at Wal-mart that read "what's not to like?", we alternate that with his "it's all about me" shirt

Re: A Rose by any other name

> there is a great t shirt that says "I have autism, what's your excuse" Oh, I love it! Have to get one of those. Got my son a t shirt that says"whatever they said IT WASN'T ME"(for people who are quick to blame everything on the autistic kid)Laurie

[Guest guest]

......I'd feel reallly strong about adding an " O " ....for Obscene...for what has

been perpetrated upon us all...

>

> From: " kcandm " <KCandM@...>

> Date: 2005/04/26 Tue PM 02:53:13 EDT

> EOHarm

> Subject: Re: A Rose by any other name

>

>

>

> I keep trying to think up a catchy abbreviation name (like AIDS). I

> like using the A for acquired and then we need to add letters that

> combine to make a pronouncable and memorable word that also

> accurately

> portrays our damaged children, but one that would be acceptable by a

> large part of our community.

> A for acquired

> D for developmental

> I for immunological

> G for gastrointestinal

> M for multisystem

> H, HM, or HMP for heavy metal poisoning

> I for iatrogenic

> A for avoidable

> N for neurological

> M for mercurial

> EC for early childhood

> M for metabolic disarray

> etc.....

> Surely there's some good names in there if you recombine those

> letters

> enough times.

>

>

>

>

>

>

>

>

>

[Guest guest]

I think that there is no a good part about having BPES, not only for cosmetic reasons (although they are not the most important), but for ophtalmologic and fertility issues. I am the father of a girl with BPES, she is eight-years old and I like her face most. She doesn´t need surgery because her visual acuity is good, at least until now. So we are waiting and if she wants surgery in the future when she grows older she´ll have it. A DNA mutation doesn,t do us better or worse, just different. All of us have differente DNA polymorphisms at least 10.000.000 or more, in other case all of us would be identical. The issue with BPEs is that many people don´t respect one another. Some children insult my little girl becasuse she has strange eyes, the same eyes that I love.

blepharophimosis From: shewhomustbekept@...Date: Mon, 19 Nov 2007 21:00:59 -0500Subject: blepharophimosis A rose by any other name

In my family we call a spade a spade. It's a genetic abnormality. It's not something to be ashamed of because it can't be helped. They love us because of who we are not what we look like. Though the good part about having BPES (or being touched by BPES) is that we get to see the world from a different angle.We get to know early on that it's the little things that mean more than the overstated grand standing. We get to know that life is precious. We learn to be accepting of other people with differences.We learn to treat people as we would like to be treated.We learn that beauty really does shine from within, and sometimes the people who may look better than average, sometimes have the ugliest hearts.When you boil it down. We love our kids. We wish them the best in life. We teach them the values that were instilled within us. We try to give them a better life than we ourselves had. And I think we all do a damn good job of it.You're a strong woman . Wouldn't you all agree??

Email and AIM finally together. You've gotta check out free AOL Mail!

Express yourself instantly with MSN Messenger! MSN Messenger

[Guest guest]

Clare Teale - Herts UK. Excellent to all, this is what I love about this site........ Love to all Clare luis ortega <lortega57@...> wrote: I think that there is no a good part about having BPES, not only for cosmetic reasons (although they are not the most important), but for ophtalmologic and fertility issues. I am the father of a girl with BPES, she is eight-years old and I like her face most. She doesn´t need surgery because

her visual acuity is good, at least until now. So we are waiting and if she wants surgery in the future when she grows older she´ll have it. A DNA mutation doesn,t do us better or worse, just different. All of us have differente DNA polymorphisms at least 10.000.000 or more, in other case all of us would be identical. The issue with BPEs is that many people don´t respect one another. Some children insult my little girl becasuse she has strange eyes, the same eyes that I love. blepharophimosis From: shewhomustbekeptaolDate: Mon, 19 Nov 2007 21:00:59 -0500Subject: blepharophimosis A rose by any other name In my family we call a spade a spade. It's a genetic abnormality. It's not something to be ashamed of because it can't be helped. They love us because of who we are

not what we look like. Though the good part about having BPES (or being touched by BPES) is that we get to see the world from a different angle.We get to know early on that it's the little things that mean more than the overstated grand standing. We get to know that life is precious. We learn to be accepting of other people with differences.We learn to treat people as we would like to be treated.We learn that beauty really does shine from within, and sometimes the people who may look better than average, sometimes have the ugliest hearts.When you boil it down. We love our kids. We wish them the best in life. We teach them the values that were instilled within us. We try to give them a better life than we ourselves had. And I think we all do a damn good job of it.You're a strong woman . Wouldn't you all agree?? Email and AIM finally together. You've gotta check out free AOL Mail! Express yourself instantly with MSN Messenger! MSN Messenger Clare Teale incredit Ltd Saffron Ground Ditchmore Lane age, SG1 3LJ 01438 794439 direct line 01438 794444

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