People in the database who are from other parts of the world

[Guest guest]

Hi

Here is a list of people who are in the part of the group

called “database”, who live in somewhere other than USA, UK,

Canada, Australia and New Zealand. There are nearly 800 members in our

group. About 150 have chosen to put some information about

themselves in the section of the site called “Database”.

I hope you find it useful … and feel encouraged to

add your name, and as little / most information about yourselves.

My guess is that if you see about 1 or 2  people in this list

for your country, it probably means that there are at least 3 to 6 people in

the group for your country (this is just an approximation). As to  how

many people there are in the whole of your country?  Based on what I have read,

and I am not an expert, but I did some research on this – I think that

there are between 3 and 10 per million.

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

Sabine

binenow@...

Vienna

Austria

Elias

2001 / Male

yes

Bine

mallory

perry

CACHARONINA@...

ELEUTHERA

BAHAMAS

JUST

ME

2001

FEMALE

NONE

de Beukelaer

bdewergifosse@...

Brussels

-

Belgium

 Audrey

2005/01 FEMALE

Silicone sling suspension - january 2006 (Gent Belgium)

YES

valentin herinckx

anne.pascale.schillings@...

Lasne

Belgium

Just Valentin

1994 - male

2000 : canthoplasty and frontal supension Brussels) - next

operation next july( UZ Gent )

yes

Jeroen and Jens

jeroen.kleinen@...

Antwerp

Belgium

Me and my son Jens

Jeroen: 1976 male; Jens: 2001 male

I had surgery at the age of 6\, 8 and 11 (first correction of

the epicanthus inversus\, second lifting of the eyelids). For Jens surgery is

planned in 2006

Yes

jeroenkleinen

Lise

Jensen

sbjoglise.jensen@...

Søvænget

5 th\, 4622 Havdrup

Denmark

Only

my son\, now 17 month

260306

m

none

yet

yes\,

very much

Sylvester2603

nne

mijanneb@...

Copenhagen

Denmark

1

- my daugther caroline

Girl

-  Born February 2002

1\,

correcting epicanthus inversus\, jan 2005

Yes

a

anjashahin@...

Berlin

Germany

me

2002 / Female

yes!

Helene

LangRegina@...

Leipzig

Germany

1

2002/Female

yes!

kleine_muellerin@...

O'Brien

hplisaobr@...

Maynooth\,

County Kildare

Ireland

Daughter

-

May

2006 Female

1st

Sling Surgery expected by 1yrs old

Yes

please!

hplisaobr

Elinor

elinordomb@...

Tel Aviv

Israel

only me

1975/female

had a few\, the last one when I was 18y/o

yes

Francesco

fraolga@...

Milan

Italy

Italy

our

daughter Caterina

2004

first

one at 10 months\, waiting the second one

yes

please

Radek/Alice

Liath_6@...

Milan

Italy/Czech

Rep.

Italy

2

- me and my daughter

me

in 1974 and my daughter in 2005

me

had 3 surgeris in Czech Rep. when I was child\, last I had 12 yrs old. Alice

had frontal suspension on Dec 2005.

Yes

sure

bolas1212

Anushka

deepak953@...

Muscat

Oman

None

2003 / Female

None as yet (first one in October\, 2006)

Yes

Deepak (Father)

Hogg

chogg@...

Porto

Portugal

just

me

1999/male

none

yet

yes

Naomi C.

ern_chang@...

Singapore

Singapore

One - Naomi only

2002/Female

None to date - lid taping only

Yes

llmmcc7@...

Madrid

Spain

just

me

1983

i

have 2\, one when i was 6 old and the other one i was 8 years old

i'd

love it

Ami Helge

pb2x_banshee@...

Växjö

Sweden (born in the usa)

Myself and my biological father

1969-Female

numerous surguries from the time I was 10 mins old til i was 6

sure!

pb2x_banshee

Dolph

Heideman

ajheideman@...

Purmerend

Noord-Holland

The

Netherlands

Our

son René (32) and his daughter\, our granddaughter (02-04-2004)

Yes

Nina

bc@...

warmond

The

Netherlands

1

2001

/ Female

ptosis

surgery at 5 1/2 months

yes

bc

[Guest guest]

Shireen,

Wish you and all members of this group a happy and healthy new year.

How can I make alterations in the database?

Regards,

Dolph Heideman

Purmerend - Holland

blepharophimosis People in the database who are from other parts of the world

Hi

Here is a list of people who are in the part of the group called “database”, who live in somewhere other than USA, UK, Canada, Australia and New Zealand. There are nearly 800 members in our group. About 150 have chosen to put some information about themselves in the section of the site called “Database”.

I hope you find it useful … and feel encouraged to add your name, and as little / most information about yourselves.

My guess is that if you see about 1 or 2 people in this list for your country, it probably means that there are at least 3 to 6 people in the group for your country (this is just an approximation). As to how many people there are in the whole of your country? Based on what I have read, and I am not an expert, but I did some research on this – I think that there are between 3 and 10 per million.

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

Sabine

binenow@...

Vienna

Austria

Elias

2001 / Male

yes

Bine

mallory perry

CACHARONINA@...

ELEUTHERA

BAHAMAS

JUST ME

2001 FEMALE

NONE

de Beukelaer

bdewergifosse@...

Brussels

-

Belgium

Audrey

2005/01 FEMALE

Silicone sling suspension - january 2006 (Gent Belgium)

YES

valentin herinckx

anne.pascale.schillings@...

Lasne

Belgium

Just Valentin

1994 - male

2000 : canthoplasty and frontal supension Brussels) - next operation next july( UZ Gent )

yes

Jeroen and Jens

jeroen.kleinen@...

Antwerp

Belgium

Me and my son Jens

Jeroen: 1976 male; Jens: 2001 male

I had surgery at the age of 6\, 8 and 11 (first correction of the epicanthus inversus\, second lifting of the eyelids). For Jens surgery is planned in 2006

Yes

jeroenkleinen

Lise Jensen

sbjoglise.jensen@...

Søvænget 5 th\, 4622 Havdrup

Denmark

Only my son\, now 17 month

260306 m

none yet

yes\, very much

Sylvester2603

nne

mijanneb@...

Copenhagen

Denmark

1 - my daugther caroline

Girl - Born February 2002

1\, correcting epicanthus inversus\, jan 2005

Yes

a

anjashahin@...

Berlin

Germany

me

2002 / Female

yes!

Helene

LangRegina@...

Leipzig

Germany

1

2002/Female

yes!

kleine_muellerin@...

O'Brien

hplisaobr@...

Maynooth\, County Kildare

Ireland

Daughter -

May 2006 Female

1st Sling Surgery expected by 1yrs old

Yes please!

hplisaobr

Elinor

elinordomb@...

Tel Aviv

Israel

only me

1975/female

had a few\, the last one when I was 18y/o

yes

Francesco

fraolga@...

Milan

Italy

Italy

our daughter Caterina

2004

first one at 10 months\, waiting the second one

yes please

Radek/Alice

Liath_6@...

Milan

Italy/Czech Rep.

Italy

2 - me and my daughter

me in 1974 and my daughter in 2005

me had 3 surgeris in Czech Rep. when I was child\, last I had 12 yrs old. Alice had frontal suspension on Dec 2005.

Yes sure

bolas1212

Anushka

deepak953@...

Muscat

Oman

None

2003 / Female

None as yet (first one in October\, 2006)

Yes

Deepak (Father)

Hogg

chogg@...

Porto

Portugal

just me

1999/male

none yet

yes

Naomi C.

ern_chang@...

Singapore

Singapore

One - Naomi only

2002/Female

None to date - lid taping only

Yes

llmmcc7@...

Madrid

Spain

just me

1983

i have 2\, one when i was 6 old and the other one i was 8 years old

i'd love it

Ami Helge

pb2x_banshee@...

Växjö

Sweden (born in the usa)

Myself and my biological father

1969-Female

numerous surguries from the time I was 10 mins old til i was 6

sure!

pb2x_banshee

Dolph Heideman

ajheideman@...

Purmerend

Noord-Holland

The Netherlands

Our son René (32) and his daughter\, our granddaughter (02-04-2004)

Yes

Nina

bc@...

warmond

The Netherlands

1

2001 / Female

ptosis surgery at 5 1/2 months

yes

bc

[Guest guest]

Hi Dolph

You visit the Group, then if necessary, you need to log

in, then you click on Database, then you will see a list of Tables but there is

only one table J

You click on  “BPES List”.  The screen will update ….

Here you can see the list. You can scroll through it, or use “Search”.

Once you have found your entry you look on the right, there is link to “Edit”

This screenshot may help you.

Regards

Shireen

      

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of Dolph Heideman

Sent: 01 January 2009 12:27

blepharophimosis

Subject: Re: blepharophimosis People in the database who are from

other parts of the world

Shireen,

Wish

you and all members of this group a happy and healthy new year.

How can

I make alterations in the database?

Regards,

Dolph

Heideman

Purmerend

- Holland

-----

Original Message -----

From: Shireen Mohandes

blepharophimosis

Sent: Thursday, January

01, 2009 11:31 AM

Subject: blepharophimosis

People in the database who are from other parts of the world

Hi

Here is a list of people who are in the

part of the group called “database”, who live in somewhere

other than USA, UK, Canada, Australia and New Zealand. There are nearly

800 members in our group. About 150 have chosen to put some

information about themselves in the section of the site called

“Database”.

I hope you find it useful …

and feel encouraged to add your name, and as little / most information about

yourselves.

My guess is that if you see about 1 or 2

people in this list for your country, it probably means that there are at

least 3 to 6 people in the group for your country (this is just an

approximation). As to how many people there are in the whole of your

country? Based on what I have read, and I am not an expert, but I did

some research on this – I think that there are between 3 and 10 per

million.

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

Sabine

binenow@...

Vienna

Austria

Elias

2001 / Male

yes

Bine

mallory perry

CACHARONINA@...

ELEUTHERA

BAHAMAS

JUST ME

2001 FEMALE

NONE

de Beukelaer

bdewergifosse@...

Brussels

-

Belgium

Audrey

2005/01 FEMALE

Silicone sling suspension - january

2006 (Gent Belgium)

YES

valentin

herinckx

anne.pascale.schillings@...

Lasne

Belgium

Just Valentin

1994 - male

2000 : canthoplasty and frontal

supension Brussels) - next operation next july( UZ Gent )

yes

Jeroen and

Jens

jeroen.kleinen@...

Antwerp

Belgium

Me and my son Jens

Jeroen: 1976 male; Jens: 2001 male

I had surgery at the age of 6\, 8 and

11 (first correction of the epicanthus inversus\, second lifting of the

eyelids). For Jens surgery is planned in 2006

Yes

jeroenkleinen

Lise Jensen

sbjoglise.jensen@...

Søvænget 5 th\, 4622 Havdrup

Denmark

Only my son\, now 17 month

260306 m

none yet

yes\, very much

Sylvester2603

nne

mijanneb@...

Copenhagen

Denmark

1 - my daugther caroline

Girl - Born February 2002

1\, correcting epicanthus inversus\, jan 2005

Yes

a

anjashahin@...

Berlin

Germany

me

2002 / Female

yes!

Helene

LangRegina@...

Leipzig

Germany

1

2002/Female

yes!

kleine_muellerin@...

O'Brien

hplisaobr@...

Maynooth\, County Kildare

Ireland

Daughter -

May 2006 Female

1st Sling Surgery expected by 1yrs old

Yes please!

hplisaobr

Elinor

elinordomb@...

Tel Aviv

Israel

only me

1975/female

had a few\, the last one when I was 18y/o

yes

Francesco

fraolga@...

Milan

Italy

Italy

our daughter Caterina

2004

first one at 10 months\, waiting the second one

yes please

Radek/Alice

Liath_6@...

Milan

Italy/Czech Rep.

Italy

2 - me and my daughter

me in 1974 and my daughter in 2005

me had 3 surgeris in Czech Rep. when I was child\,

last I had 12 yrs old. Alice had frontal suspension on Dec 2005.

Yes sure

bolas1212

Anushka

deepak953@...

Muscat

Oman

None

2003 / Female

None as yet (first one in October\,

2006)

Yes

Deepak (Father)

Hogg

chogg@...

Porto

Portugal

just me

1999/male

none yet

yes

Naomi C.

ern_chang@...

Singapore

Singapore

One - Naomi only

2002/Female

None to date - lid taping only

Yes

llmmcc7@...

Madrid

Spain

just me

1983

i have 2\, one when i was 6 old and the other one i

was 8 years old

i'd love it

Ami Helge

pb2x_banshee@...

Växjö

Sweden (born in the usa)

Myself and my biological father

1969-Female

numerous surguries from the time I was

10 mins old til i was 6

sure!

pb2x_banshee

Dolph Heideman

ajheideman@...

Purmerend

Noord-Holland

The Netherlands

Our son René (32) and his daughter\, our

granddaughter (02-04-2004)

Yes

Nina

bc@...

warmond

The Netherlands

1

2001 / Female

ptosis surgery at 5 1/2 months

yes

bc