Re: BPES in Aussie Mainstream - though slightly tacky - Mag

[Guest guest]

Thank you for going through all the trouble of sharing that with us...

Ontario, Canada

blepharophimosis BPES in Aussie Mainstream - though slightly tacky - Mag

Hi All,This was in the Australian Edition of 'New Idea' and I thought I'd share it with all of you.Much to my dismay, I don't own a scanner and my digital camera wouldn't take pictures clear enough to read the writing. So, I've typed it all out, but it's all copyrighted to the NI people and all that jazz. (Don't sue me, I'm poor.)The article isn't particularly technical or enlightening to any of us, but it's the first one I've seen about BPES in... well, a long time. Enjoy. :)Oh - and in case any of the Aussie raise their eyebrows at me... This was sent to me, I didn't buy the magazine!Ky***SAVING FACE - Bianca Moon has endured a lot - facial disfigurement, bullying and a car accident - to become the role model she is today.After years of painful surgeries and schoolyard bullying, Bianca Moon has a huge reason to smile when she recently met her idol

Lang from `The Bold and the Beautiful.'The aspiring actress and singer quizzed , who has played on the soap for 20 years, and filled her in on Truly Beautiful, the charity she founded for people with craniofacial disfigurements.Eighteen-year- old Bianca was born with blepharophimosis, a condition where sufferers have no eyelid muscles, very wide set eyes and a flattened nose bridge. After four operations, the condition was corrected as much as possible by the time Bianca was five. However, Bianca was left with wide-set small eyes, which led to relentless bullying.`When I was 11, that was the worst year of mu life. One girl told me she was going to push me under a bus and I always used to get rude racial remarks. Because of my eyes, people assume I'm Asian, although that doesn't bother me,' she says.After learning she's most likely infertile due to the ovarian

complications, fate again took a cruel twist when Bianca was involved in a care accident three years ago. The crash brought on a previously undiagnosed condition called Chiari malformation, which produced cysts in her spinal column. After lifesaving surgery, the teen was bedridden for almost six months.`I couldn't believe my luck,' she says. `The only thing I had to look forward to was watching The Bold And The Beautiful every day.' says she's amazed by Bianca's fighting spirit.`It's really inspiring she wants to help others,' says, `She's such a beautiful young woman, she's really wise for her age and has a real motivation to make a difference. admires Bianca's confidence in her looks - something she didn't always possess herself.`Everybody nitpicks themselves about their body and their face. It's hard for me sometimes because my face is on TV and I notice things I

don't like/. You have to forget about that because it's not what matters - it's what you contribute to the world.'Through her charity work Bianca has met other high profile celebrities, such as Joan Rivers and Bette Midler, and Cher is a big supporter of craniofacial endeavours following her role in the 1985 film Mask.Among Bianca's aims is getting schoolyard bullying outlawed and hosting Sydney's Truly Beautiful Masked Ball later this year to raise money for the charity. `Our slogan is: "Don't hate me, `cause I'm beautiful." People with facial disfigurements may look different, but they're still intellectual, beautiful human beings.'• For more information about the ball, log on to www.trulybeautiful. orgFACING THE FACTS: - The Australian Craniofacial Unit in Adelaide is the country's leading facility devoted to treating facial disfigurements, and is the world leader in

education, research and treatment.- The most common conditions treated at the unit include cleft lip and cleft palate, severe deformities of the face and skull and disfigurement from accidents.- blepharophimosis is hereditary, and it can lead to infertility in some sufferers.- If a woman with the condition is able to bear a child, there's a 50% chance their offspring will also be born with the condition.- Log on to www.craniofacial. com.au for more information.

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[Guest guest]

That article is terrible....People with BPES do not have craniofacial disfigurements! They have small eye openings...so insulting...

-- blepharophimosis BPES in Aussie Mainstream - though slightly tacky - Mag

Hi All,This was in the Australian Edition of 'New Idea' and I thought I'd share it with all of you.Much to my dismay, I don't own a scanner and my digital camera wouldn't take pictures clear enough to read the writing. So, I've typed it all out, but it's all copyrighted to the NI people and all that jazz. (Don't sue me, I'm poor.)The article isn't particularly technical or enlightening to any of us, but it's the first one I've seen about BPES in... well, a long time. Enjoy. :)Oh - and in case any of the Aussie raise their eyebrows at me... This was sent to me, I didn't buy the magazine!Ky***SAVING FACE - Bianca Moon has endured a lot - facial disfigurement, bullying and a car accident - to become the role model she is today.After years of painful surgeries and schoolyard bullying, Bianca Moon has a huge reason to smile when she recently met her idol Lang from `The Bold and the Beautiful.'The aspiring actress and singer quizzed , who has played on the soap for 20 years, and filled her in on Truly Beautiful, the charity she founded for people with craniofacial disfigurements.Eighteen-year-old Bianca was born with blepharophimosis, a condition where sufferers have no eyelid muscles, very wide set eyes and a flattened nose bridge. After four operations, the condition was corrected as much as possible by the time Bianca was five. However, Bianca was left with wide-set small eyes, which led to relentless bullying.`When I was 11, that was the worst year of mu life. One girl told me she was going to push me under a bus and I always used to get rude racial remarks. Because of my eyes, people assume I'm Asian, although that doesn't bother me,' she says.After learning she's most likely infertile due to the ovarian complications, fate again took a cruel twist when Bianca was involved in a care accident three years ago. The crash brought on a previously undiagnosed condition called Chiari malformation, which produced cysts in her spinal column. After lifesaving surgery, the teen was bedridden for almost six months.`I couldn't believe my luck,' she says. `The only thing I had to look forward to was watching The Bold And The Beautiful every day.' says she's amazed by Bianca's fighting spirit.`It's really inspiring she wants to help others,' says, `She's such a beautiful young woman, she's really wise for her age and has a real motivation to make a difference. admires Bianca's confidence in her looks - something she didn't always possess herself.`Everybody nitpicks themselves about their body and their face. It's hard for me sometimes because my face is on TV and I notice things I don't like/. You have to forget about that because it's not what matters - it's what you contribute to the world.'Through her charity work Bianca has met other high profile celebrities, such as Joan Rivers and Bette Midler, and Cher is a big supporter of craniofacial endeavours following her role in the 1985 film Mask.Among Bianca's aims is getting schoolyard bullying outlawed and hosting Sydney's Truly Beautiful Masked Ball later this year to raise money for the charity. `Our slogan is: "Don't hate me, `cause I'm beautiful." People with facial disfigurements may look different, but they're still intellectual, beautiful human beings.'• For more information about the ball, log on to www.trulybeautiful.orgFACING THE FACTS: - The Australian Craniofacial Unit in Adelaide is the country's leading facility devoted to treating facial disfigurements, and is the world leader in education, research and treatment.- The most common conditions treated at the unit include cleft lip and cleft palate, severe deformities of the face and skull and disfigurement from accidents.- blepharophimosis is hereditary, and it can lead to infertility in some sufferers.- If a woman with the condition is able to bear a child, there's a 50% chance their offspring will also be born with the condition.- Log on to www.craniofacial.com.au for more information.

[Guest guest]

What would one expect from No Idea? They not known for being the epitome

of journalistic depth or scientific rigour. Possibly tolerable for a

scone recipe or knitting pattern, but not much else.

Note that Bianca has also appeared on ABC 702 radio discussing BPES,

plugging her charity and girly website (as with No Idea). I don't have a

problem with that, I'm sure it's a good cause and as they say, any

publicity's good publicity.

I agree, though, the term " craniofacial disfigurement " carries more

alarming Elephant Man connotations than the milder " eyelid malformation "

would.

Rob " I am not an animal (despite what my wife says) " W

Costello wrote:

>

>

> That article is terrible.... People with BPES do not have craniofacial

> disfigurements! They have small eye openings...so insulting...

>

> /--*/ blepharophimosis BPES in Aussie Mainstream - though

> slightly tacky - Mag

>

>

[Guest guest]

Rob you are such a hoot! Thank goodness you are here with us! I

totally agree with you, and I'm positive that Mr. Merrick would

too! " I am not an animal! "

> >

> >

> > That article is terrible.... People with BPES do not have

craniofacial

> > disfigurements! They have small eye openings...so insulting...

> >

> > /--*/ blepharophimosis BPES in Aussie Mainstream -

though

> > slightly tacky - Mag

> >

> >

>

[Guest guest]

I have to agree with Rob - No Idea aren't known for being the most reputable of publications. (OMG! Britney's Pregnant! Angie is cheating on Brad! TomKat are fighting!) which would be why I was very clear to state that I hadn't paid four bucks for the mag. Costello - I'm sorry you feel that way, though I'd tend to agree. It's not the best term to use but, honestly, what do you expect from anyone that's never heard of BPES? Regardsless of the credibility of the article, it's still nice to see SOMETHING about this in mainstream publications, especially after we've all (Well, I certainly did) struggled to find something that would even have the correct spelling... pre-internet, of course. Ky, who will now crawl back into her hole.Rob <r.watson@...> wrote: What would one expect from No Idea? They not known for being the epitome of journalistic depth or scientific rigour. Possibly tolerable for a scone recipe or knitting pattern, but not much else.Note that Bianca has also appeared on ABC 702 radio discussing BPES, plugging her charity and girly website (as with No Idea). I don't have a problem with that, I'm sure it's a good cause and as they say, any publicity's good publicity.I agree, though, the term "craniofacial disfigurement" carries more alarming Elephant Man connotations than the milder "eyelid malformation" would.Rob "I am not an animal

(despite what my wife says)" WCostello wrote:> > > That article is terrible.... People with BPES do not have craniofacial > disfigurements! They have small eye openings...so insulting... > > /--*/ blepharophimosis BPES in Aussie Mainstream - though > slightly tacky - Mag> >

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[Guest guest]

Geez, that article was bad and so is the website. I hope some of

these celebrity donors help her with her website.

Sometimes when I read stuff like that, I feel like something worse is

wrong with me cause I don't think I'm that bad off.

I am not familiar with the magazine, but I guess it's a tabloid, in a

weird way, I am kind of proud BPES made it into a tabloid....

Thanks for sharing, anyway

> > >

> > >

> > > That article is terrible.... People with BPES do not have

> craniofacial

> > > disfigurements! They have small eye openings...so insulting...

> > >

> > > /--*/ blepharophimosis BPES in Aussie Mainstream -

> though

> > > slightly tacky - Mag

> > >

> > >

> >

>

[Guest guest]

ALL HAIL ROB!!!!! Haha! Love it! I must say, I do believe you should be running this group! Your humour is awesome! Outstanding. Keep it coming Rob!! Our family thinks YOU ROCK!!!!! Thanks for your brilliant entertaining wit........Rob <r.watson@...> wrote: What would one expect from No Idea? They not known for being the epitome of journalistic depth or scientific rigour. Possibly tolerable for a scone recipe or knitting pattern, but not much

else.Note that Bianca has also appeared on ABC 702 radio discussing BPES, plugging her charity and girly website (as with No Idea). I don't have a problem with that, I'm sure it's a good cause and as they say, any publicity's good publicity.I agree, though, the term "craniofacial disfigurement" carries more alarming Elephant Man connotations than the milder "eyelid malformation" would.Rob "I am not an animal (despite what my wife says)" WCostello wrote:> > > That article is terrible.... People with BPES do not have craniofacial > disfigurements! They have small eye openings...so insulting... > > /--*/ blepharophimosis BPES in Aussie Mainstream - though > slightly tacky - Mag> >

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