Re: 4month old with bleph from Australia

[Guest guest]

> Hi, my name is Kylie (24)

Hi Kylie. Welcome. This is a magical place. There's another Oz Kylie

hereabouts, also about 24 (well, closer to 24 than me, anyway). Beware

of imitations.

> and i just recently had a baby with bleph.

> My parnter also has bleph as well as his brother and his 2 kids. I am

> wondering if anyone could give me any information about how old they

> have to be before the operation is done?

Depends. (You were afraid I'd say that, right?)

If the ptosis (droopy eyelids) is interfering with vision, or maybe

causing neck problems due to head tilting, surgeons will correct it

ASAP. Otherwise, surgeons prefer to wait until just before school to do

the TWO main operations: one to correct the ptosis, then one for the

blepharophimosis (small eye openings due, in BPES, to telecanthus) and

epicanthus inversus (inverted canthal skin folds).

> And if there is anyone from

> Australia that has had the operation done or has bleph. I would like

> to meet other people with bleph.

There are a number of us Ozzistanis here. Which bit are you in? (Please

don't say " the dry bit " ). If you're in Sinny, confess.

I've had most of the operations, and a few others, but 20 to 45 years

ago. But My son has had a smidgin or two more recently, so I know some

of the surgeons in the game (at least in Sinny).

Rob W

Syd-er-ney, Oz

[Guest guest]

Hi Kylie

Welcome to the group. Here is an extract from the database. These

are people living in Australia who would like to be in touch with others.

Regards

Shireen Mohandes

London, England

Name

Email

Address & City

State

Country

People in my family with BPES

Year of birth / Gender

Surgery information

Would like to meet others in

area

My ID for Messenger

Antonia Collin

nicoleacollin@...

Sydney

NSW

Austraila

Antonia

2005

yes

Ky

kylie@...

Sydney

NSW

Australia

Just me.

1986/female

10 and counting

Sure

ally

kaldi@...

Gold coast

Queensland

Australia

Myself+2 of my sons.

1967 Female

8 opps from the age of 2 to 16.

yes

allygirl

Bridget Armitage

pcarmitage@...

Canberra

ACT

Australia

None

2006,Female

Yes

pc_armitage

Robyn Fortune

drtfortune@...

Perth

Western Australia

Australia

Son, Tyler

2006, Male

First surgery planned for mid 2007.

Yes, definitely.

drtfortune

Bree Hills

breehills@...

Brisbane

Queensland

Australia

My 2nd daughter, Hannah Mei

2005 / Female

ophthalmologist says we start talking around 3rd birthday

Yes

Jessie H. (mum machaela)

machaela@...

Ballarat

Australia

only Jessie

2005 F

planned for Dec.'07

definately

macster74@...

Rob

r.watson@...

Sydney

NSW

Australia

Father, aunty, me, son

1961 / Male

Slings, canthoplasties, squints, tear ducts

Yes

kerry bennett

mnmom1325@...

Sale

Australia

Daughter,husband,father inlaw the list goes on

Daughter 2002 husband 1969

husband had surgury when he was a child didn't work

daughter having her first surgery later this year.

yes please

a and Charlie Schneider

mepas@...

Melbourne

Australia

Just charlie

2002/male

none yet

yes

charlie

Karolin Demircian

karolin_demircian@...

2 Close Endeavour Hill, Melbourne

3802

Australia

Myself, daughter 5 yrs son 10mths

1975 Female

Surgery x 3

Yes

Home phone = 613- 9700 7321; work = 0413 936188

Sabine

binenow@...

Vienna

Austria

Elias

2001 / Male

yes

Bine

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of kylieandmacca

Sent: 02 October 2007 10:04

blepharophimosis

Subject: blepharophimosis 4month old with bleph from Australia

Hi, my name is Kylie (24) and i just recently

had a baby with bleph.

My parnter also has bleph as well as his brother and his 2 kids. I am

wondering if anyone could give me any information about how old they

have to be before the operation is done? And if there is anyone from

Australia that has had the operation done or has bleph. I would like

to meet other people with bleph.

Thanks

-Kylie

[Guest guest]

Hi Kylie,

I have two daughters, one of which has BPES.

There has been no trace of this condition in my family prior to having our first daughter.

We are currently living in Brisbane, though still go to Sydney for my daughter, Antonia's check ups.

Antonia was diagnosed very early and easily and we started to see Dr at The Eye Institute @ Cremorne.

He saw her every 6 months for a check up until around 18 months when he decided it could be time for her to have her epicanthal folds done. He sent us to Dr at The Eye Instite @ Chatswood & Bondi who was to do the surgery.

We did see other surgeons for a second opinion, though continued with as we were told by other surgeons that he had done a substantial portion of the surgeries done in NSW and he was an excellent surgeon.

Antonia is 2 3/4 and we did her epicanthus inversus surgery in April (just gone) with at Sydney Eye Hospital on Macquarie St, Sydney.

It was a terribly upsetting day for us, though Antonia was bouncing around the ward 1/2 an hour after coming out of her general anaesthetic and for a long time talked about how the "doctor fixed her eyes".

We are very happy with the surgery and in a year or so we'll consider if we want to go ahead with the ptosis surgery.

If you'd like to contact me, please feel free to do so at collinhome@....

Collin

Brisbane, Aust.

blepharophimosis 4month old with bleph from Australia

Hi, my name is Kylie (24) and i just recently had a baby with bleph. My parnter also has bleph as well as his brother and his 2 kids. I am wondering if anyone could give me any information about how old they have to be before the operation is done? And if there is anyone from Australia that has had the operation done or has bleph. I would like to meet other people with bleph.Thanks-Kylie

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[Guest guest]

Hi Kylie! Welcome to the group... My name is Machaela and I am 33yrs old. My daughter has BPES and is 2yrs old. She is the first in our family to be born with it and we are also from Australia!! We are in . Jessie is having her first surgery at the end of this year as she will be turning 3 in January.She is under the care of Dr Elder at the RCH in Melbourne. Her surgery will be done by Dr Su. We were told that it was best to wait till Jess was about 3yrs to start any surgery unless her eyesight was deteriorating, but I believe from what I have learnt here that it seems to be a very individual thing... We would dearly love to meet ANYONE!! with bpes!! so you will have to let us know what part of aus.you are from!! Cheers!! kylieandmacca <kylieandmacca@...> wrote: Hi, my name is Kylie (24) and i just recently had a baby with bleph. My parnter also has bleph as well as his brother and his 2 kids. I am wondering if anyone could give me any information about how old they have to be before the operation is done? And if there is anyone from Australia that has had the operation done or has bleph. I would like to meet other people with bleph.Thanks-Kylie

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[Guest guest]

I think you emailed me by mistake! I am the Mom of , age 6, with Bleph, but have never been to Australia, and have no plans to go. Although I'm dying to go! We live in Chicago.

Let me know if you have any questions for us!

Sari Shein************************************** See what's new at http://www.aol.com

[Guest guest]

Hello all,

I have recently found out that I have BPES and so does my

one year old son, . I noticed that he couldn't open his eyes when he

was born. I wasn't diagnosed before because my symptoms were not as

severe. I have been reading your messages for a while - there are some

really knowledgeable people out there. I have a couple of questions:

Firstly to anyone from England: We don't

know for sure whether or not to opt for surgery for . If he does can we

choose our surgeon? Our current consultant is in the north east (where we live)

but has only performed this operation four times. Are there more experienced

surgeons in the south?

Secondly, to anyone out there: I asked to be referred to a geneticist

in order to find out more about Type 1 and Type 2 and fertility issues. I am

keen to have more children myself and I would like more information for any

girls I have. The geneticist took blood but decided not to send it off to Belgium to be analysed

because she didn't think it would give my any useful information. One

reason was because I am the first in my family to have this condition so she

said the mutation may have happened after conception and not be present in all

my cells (and therefore my blood may not contain the mutated DNA) and secondly

she said that it may not give me any useful information anyway. Is this the

story you have all been given or can I find out more about mine and my children's

fertility from a DNA test?

I look forward to meeting some of you if there is and England get

together.

Best wishes

(Durham, England)

[Guest guest]

Hi my name is Madonna, living in Melbourne, Australia. My son Albert has bleph.

He is now 3 and I was told when he was about 1 month, and was told he also has

Ohdo Syndrome when he was about 2 months, and they(doctors)tell me that it is

not uncommon to have the two together, Albert has had surgery for a sling and

some sutures to give him folds on his bottom lids, cause his lashes were sitting

on his eyes, our next visit is not for another 3 months with Dr Elder at the

RCH. Albert is the first in the family to have this condition.

---- kylieandmacca <kylieandmacca@...> wrote:

> Hi, my name is Kylie (24) and i just recently had a baby with bleph.

> My parnter also has bleph as well as his brother and his 2 kids. I am

> wondering if anyone could give me any information about how old they

> have to be before the operation is done? And if there is anyone from

> Australia that has had the operation done or has bleph. I would like

> to meet other people with bleph.

>

> Thanks

>

> -Kylie

>