New poll for blepharophimosis

[Guest guest]

Enter your vote today! A new poll has been created for the

blepharophimosis group:

For anyone affected by Bleph, do you have what is considered

a " high-arched palate " (roof of your mouth)?

o Yes

o No

To vote, please visit the following web page:

blepharophimosis/surveys?id=1957976

Note: Please do not reply to this message. Poll votes are

not collected via email. To vote, you must go to the

web site listed above.

Thanks!

[Guest guest]

> no

> From: blepharophimosis

> Date: 2005/09/02 Fri AM 06:55:02 GMT+12:00

> blepharophimosis

> Subject: blepharophimosis New poll for blepharophimosis

>

>

> Enter your vote today! A new poll has been created for the

> blepharophimosis group:

>

> For anyone affected by Bleph, do you have what is considered

> a " high-arched palate " (roof of your mouth)?

>

> o Yes

> o No

>

>

> To vote, please visit the following web page:

> blepharophimosis/surveys?id=1957976

>

> Note: Please do not reply to this message. Poll votes are

> not collected via email. To vote, you must go to the

> web site listed above.

>

> Thanks!

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

There is no where to say if your child has

been unaffected. I have a daughter but she does not have it but I can not

apply this. I am really interested in this poll, great idea!!!

From:

blepharophimosis

[mailto:blepharophimosis ]

Sent: 21 April 2006 15:57

blepharophimosis

Subject: blepharophimosis New

poll for blepharophimosis

Enter your vote today! A new poll has been created for the

blepharophimosis group:

My family always thought that the male of the family was the carrier of this

" special " gene as no female member had passed on the condition to

their children. Now four generations on, I am the exception to that rule

and am the first female to produce a child (daughter) with it, although my

first born, a son did not.<p>

If alot of your family has it - which ones?

Do I need to add anything to poll?

o Grandfather (Paternal)

o Grandmother (Paternal)

o Grandfather (Maternal)

o Grandmother (Maternal)

o Father

o Mother

o Aunt (Fathers Side)

o Uncle (Fathers Side)

o Aunt (Mothers Side)

o Uncle (Mothers Side)

o Male Sibling

o Female Sibling

o Male Cousins

o Female Cousins

o You (Female)

o You (Male)

o Niece

o Nephew

o Your Child (Daughter)

o Your Child (Son)

o Your Child (Daughter)

o Your Child (Son)

To vote, please visit the following web page:

blepharophimosis/surveys?id=2207846

Note: Please do not reply to this message. Poll votes are

not collected via email. To vote, you must go to the

web site listed above.

Thanks!

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[Guest guest]

Thank you so much for this information. I have two daughters, one

with BPES and one without. We know that my daughter is type 1

because of the family history of infertility but I we have not

talked to a genetic counselor. I always worried that even though my

youngest daughter didn't have BPES that she might be a carrier. I

cried when I read your message informing me that she will not be.

This group is a wonderful source of information.

Kathy

-- In blepharophimosis , Clare Teale <clareteale@...>

wrote:

>

> Hello all, I am a female and have a daughter with BPES, until I

logged onto this amazing site I had only ever met/heard of females

with BPES.

>

> As far as I know, and was told by a gentic counsellor - Great

Ormand Street, The syndrome has a 50, 50 chance of being with a boy

or a girl - each pregnancy.

>

> My daughter has it, my son doesnt have it. They also told my

that if the child (my son) does not have the syndrome (the obvious

signs) they have not got the affected gene and will not pass it on

to their children.

>

> Love and support to all and family's who are going through their

ops soon. It is always much harder on us (parents) than the kids,

they are so resiliant. When I had my op done at 14, I didnt really

remember it being a huge issue. However when I went through it with

my daughter, it was a really worry.

>

> Just keep talking, and talking and talking about it, it really

helps.

>

> Clare

>

>

>

> Bryony <bryony2@...> wrote:

> v\:* {behavior:url(#default#VML);} o\:* {behavior:url

(#default#VML);} w\:* {behavior:url(#default#VML);} .shape

{behavior:url(#default#VML);} st1\:*{behavior:url

(#default#ieooui) } There is no where to say if your

child has been unaffected. I have a daughter but she does not have

it but I can not apply this. I am really interested in this poll,

great idea!!!

>

>

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

>

> From: blepharophimosis

[mailto:blepharophimosis ]

> Sent: 21 April 2006 15:57

> blepharophimosis

> Subject: blepharophimosis New poll for blepharophimosis

>

>

>

> Enter your vote today! A new poll has been created for the

> blepharophimosis group:

>

> My family always thought that the male of the family was the

carrier of this " special " gene as no female member had passed on the

condition to their children. Now four generations on, I am the

exception to that rule and am the first female to produce a child

(daughter) with it, although my first born, a son did not.<p>

> If alot of your family has it - which ones?

> Do I need to add anything to poll?

>

> o Grandfather (Paternal)

> o Grandmother (Paternal)

> o Grandfather (Maternal)

> o Grandmother (Maternal)

> o Father

> o Mother

> o Aunt (Fathers Side)

> o Uncle (Fathers Side)

> o Aunt (Mothers Side)

> o Uncle (Mothers Side)

> o Male Sibling

> o Female Sibling

> o Male Cousins

> o Female Cousins

> o You (Female)

> o You (Male)

> o Niece

> o Nephew

> o Your Child (Daughter)

> o Your Child (Son)

> o Your Child (Daughter)

> o Your Child (Son)

>

>

> To vote, please visit the following web page:

> blepharophimosis/surveys?id=2207846

>

> Note: Please do not reply to this message. Poll votes are

> not collected via email. To vote, you must go to the

> web site listed above.

>

> Thanks!

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Kathy Anytime. x Clare - Herts UK z942271 <z942271@...> wrote: Thank you so much for this information. I have two daughters, one with BPES and one without. We know that my daughter is type 1 because of the family history of infertility but I we have not talked to a genetic counselor. I always worried that even though my youngest daughter didn't have BPES that she might be a carrier. I cried when I read your message informing me that she will not be. This group is a wonderful source of information.Kathy-- In blepharophimosis , Clare Teale <clareteale@...> wrote:>> Hello all, I am a female and have a daughter with BPES, until I logged onto this amazing site I

had only ever met/heard of females with BPES.> > As far as I know, and was told by a gentic counsellor - Great Ormand Street, The syndrome has a 50, 50 chance of being with a boy or a girl - each pregnancy.> > My daughter has it, my son doesnt have it. They also told my that if the child (my son) does not have the syndrome (the obvious signs) they have not got the affected gene and will not pass it on to their children.> > Love and support to all and family's who are going through their ops soon. It is always much harder on us (parents) than the kids, they are so resiliant. When I had my op done at 14, I didnt really remember it being a huge issue. However when I went through it with my daughter, it was a really worry.> > Just keep

talking, and talking and talking about it, it really helps.> > Clare > > > > Bryony <bryony2@...> wrote:> v\:* {behavior:url(#default#VML);} o\:* {behavior:url(#default#VML);} w\:* {behavior:url(#default#VML);} .shape {behavior:url(#default#VML);} st1\:*{behavior:url(#default#ieooui) } There is no where to say if your child has been unaffected. I have a daughter but she does not have it but I can not apply this. I am really interested in this poll, great idea!!! > > > ---------------------------------> > From:

blepharophimosis [mailto:blepharophimosis ] > Sent: 21 April 2006 15:57> blepharophimosis > Subject: blepharophimosis New poll for blepharophimosis> > > > Enter your vote today! A new poll has been created for the > blepharophimosis group:> > My family always thought that the male of the family was the carrier of this "special" gene as no female member had passed on the condition to their children. Now four generations on, I am the exception to that rule and am the first female to produce a child (daughter) with it, although my first born, a son did not.<p>> If alot of your family has it - which ones?> Do I need to add anything to poll? > > o Grandfather (Paternal) > o Grandmother (Paternal) > o Grandfather

(Maternal) > o Grandmother (Maternal) > o Father > o Mother > o Aunt (Fathers Side) > o Uncle (Fathers Side) > o Aunt (Mothers Side) > o Uncle (Mothers Side) > o Male Sibling > o Female Sibling > o Male Cousins > o Female Cousins > o You (Female) > o You (Male) > o Niece > o Nephew > o Your Child (Daughter) > o Your Child (Son) > o Your Child (Daughter) > o Your Child (Son) > > > To vote, please visit the following web page:> blepharophimosis/surveys?id=2207846 >

> Note: Please do not reply to this message. Poll votes are > not collected via email. To vote, you must go to the > web site listed above.> > Thanks!> > > > > > > > > > > >

[Guest guest]

I'm confused, then why did my parents both 'normal' and with no family members affected with BPES on either side, pass this peculiar gene on to me?? z942271 <z942271@...> wrote: Thank you so much for this information. I have two daughters, one with BPES and one without. We know that my daughter is type 1 because of the family history of infertility but I we have not talked to a genetic counselor. I always worried that even though my youngest daughter didn't have BPES that she might be a carrier. I cried when I read your message informing me that she will not be. This group is a wonderful source of information.Kathy-- In blepharophimosis , Clare Teale <clareteale@...>

wrote:>> Hello all, I am a female and have a daughter with BPES, until I logged onto this amazing site I had only ever met/heard of females with BPES.> > As far as I know, and was told by a gentic counsellor - Great Ormand Street, The syndrome has a 50, 50 chance of being with a boy or a girl - each pregnancy.> > My daughter has it, my son doesnt have it. They also told my that if the child (my son) does not have the syndrome (the obvious signs) they have not got the affected gene and will not pass it on to their children.> > Love and support to all and family's who are going through their ops soon. It is always much harder on us (parents) than the kids, they are so resiliant. When I had my op done at 14, I didnt really remember it being a huge issue. However

when I went through it with my daughter, it was a really worry.> > Just keep talking, and talking and talking about it, it really helps.> > Clare > > > > Bryony <bryony2@...> wrote:> v\:* {behavior:url(#default#VML);} o\:* {behavior:url(#default#VML);} w\:* {behavior:url(#default#VML);} .shape {behavior:url(#default#VML);} st1\:*{behavior:url(#default#ieooui) } There is no where to say if your child has been unaffected. I have a daughter but she does not have it but I can not apply this. I am really interested in this poll, great idea!!! >

> > ---------------------------------> > From: blepharophimosis [mailto:blepharophimosis ] > Sent: 21 April 2006 15:57> blepharophimosis > Subject: blepharophimosis New poll for blepharophimosis> > > > Enter your vote today! A new poll has been created for the > blepharophimosis group:> > My family always thought that the male of the family was the carrier of this "special" gene as no female member had passed on the condition to their children. Now four generations on, I am the exception to that rule and am the first female to produce a child (daughter) with it, although my first born, a son did not.<p>> If alot of your family has it - which ones?> Do I need to add anything to poll?

> > o Grandfather (Paternal) > o Grandmother (Paternal) > o Grandfather (Maternal) > o Grandmother (Maternal) > o Father > o Mother > o Aunt (Fathers Side) > o Uncle (Fathers Side) > o Aunt (Mothers Side) > o Uncle (Mothers Side) > o Male Sibling > o Female Sibling > o Male Cousins > o Female Cousins > o You (Female) > o You (Male) > o Niece > o Nephew > o Your Child (Daughter) > o Your Child (Son) > o Your Child (Daughter) > o Your Child (Son) > > > To vote, please visit the following web page:> blepharophimosis/surveys?id=2207846 > > Note: Please do not reply to this message. Poll votes are > not collected via email. To vote, you must go to the > web site listed above.> > Thanks!> > > > > > > > > > > >

[Guest guest]

Its my understanding that BPES can also occur through spontaneous genetic mutation. My nephew was just diagnosed by his genetisist and there is no other case of BPES in either family's history. JULIE IKEN <kookie61@...> wrote: I'm confused, then why did my parents both 'normal' and with no family members affected with BPES on either side, pass this peculiar gene on to me?? z942271 <z942271@...> wrote: Thank you so much for this information. I have two daughters, one with BPES and one without. We know that my daughter is type 1 because of the family history of infertility but I we have not talked to a genetic

counselor. I always worried that even though my youngest daughter didn't have BPES that she might be a carrier. I cried when I read your message informing me that she will not be. This group is a wonderful source of information.Kathy-- In blepharophimosis , Clare Teale <clareteale@...> wrote:>> Hello all, I am a female and have a daughter with BPES, until I logged onto this amazing site I had only ever met/heard of females with BPES.> > As far as I know, and was told by a gentic counsellor - Great Ormand Street, The syndrome has a 50, 50 chance of being with a boy or a girl - each pregnancy.> > My daughter has it, my son doesnt have it. They also told my that if the child (my son) does not have the syndrome (the obvious signs) they have not got the affected gene and will

not pass it on to their children.> > Love and support to all and family's who are going through their ops soon. It is always much harder on us (parents) than the kids, they are so resiliant. When I had my op done at 14, I didnt really remember it being a huge issue. However when I went through it with my daughter, it was a really worry.> > Just keep talking, and talking and talking about it, it really helps.> > Clare > > > > Bryony <bryony2@...> wrote:> v\:* {behavior:url(#default#VML);} o\:* {behavior:url(#default#VML);} w\:* {behavior:url(#default#VML);} .shape {behavior:url(#default#VML);}

st1\:*{behavior:url(#default#ieooui) } There is no where to say if your child has been unaffected. I have a daughter but she does not have it but I can not apply this. I am really interested in this poll, great idea!!! > > > ---------------------------------> > From: blepharophimosis [mailto:blepharophimosis ] > Sent: 21 April 2006 15:57> blepharophimosis > Subject: blepharophimosis New poll for blepharophimosis> > > > Enter your vote today! A new poll has been created for the > blepharophimosis group:> > My family always thought that the male of the family was the carrier of this

"special" gene as no female member had passed on the condition to their children. Now four generations on, I am the exception to that rule and am the first female to produce a child (daughter) with it, although my first born, a son did not.<p>> If alot of your family has it - which ones?> Do I need to add anything to poll? > > o Grandfather (Paternal) > o Grandmother (Paternal) > o Grandfather (Maternal) > o Grandmother (Maternal) > o Father > o Mother > o Aunt (Fathers Side) > o Uncle (Fathers Side) > o Aunt (Mothers Side) > o Uncle (Mothers Side) > o Male Sibling > o Female Sibling > o Male Cousins > o Female Cousins > o You (Female)

> o You (Male) > o Niece > o Nephew > o Your Child (Daughter) > o Your Child (Son) > o Your Child (Daughter) > o Your Child (Son) > > > To vote, please visit the following web page:> blepharophimosis/surveys?id=2207846 > > Note: Please do not reply to this message. Poll votes are > not collected via email. To vote, you must go to the > web site listed above.> > Thanks!> > > > > > > > > > > >

[Guest guest]

Hi As far as I am aware, and only through what i have been told, the.y didnt 'pass' this gene onto you. Like you, my mother and father did not have BPES, yet I was born with it, and i have passed it on. My genetics person and Mr Collin have both said that these cases are 'sparadic' not sure how to spell it! and you do not get it from anyone else, it is just one of those things. Cheers clare xJULIE IKEN <kookie61@...> wrote: I'm confused, then why did my parents both 'normal' and with no family members affected with BPES on either side, pass this peculiar gene on to me?? z942271 <z942271@...>

wrote: Thank you so much for this information. I have two daughters, one with BPES and one without. We know that my daughter is type 1 because of the family history of infertility but I we have not talked to a genetic counselor. I always worried that even though my youngest daughter didn't have BPES that she might be a carrier. I cried when I read your message informing me that she will not be. This group is a wonderful source of information.Kathy-- In blepharophimosis , Clare Teale <clareteale@...> wrote:>> Hello all, I am a female and have a daughter with BPES, until I logged onto this amazing site I had only ever met/heard of females with BPES.> > As far as I know, and was told by a gentic counsellor

- Great Ormand Street, The syndrome has a 50, 50 chance of being with a boy or a girl - each pregnancy.> > My daughter has it, my son doesnt have it. They also told my that if the child (my son) does not have the syndrome (the obvious signs) they have not got the affected gene and will not pass it on to their children.> > Love and support to all and family's who are going through their ops soon. It is always much harder on us (parents) than the kids, they are so resiliant. When I had my op done at 14, I didnt really remember it being a huge issue. However when I went through it with my daughter, it was a really worry.> > Just keep talking, and talking and talking about it, it really helps.> > Clare >

> > > Bryony <bryony2@...> wrote:> v\:* {behavior:url(#default#VML);} o\:* {behavior:url(#default#VML);} w\:* {behavior:url(#default#VML);} .shape {behavior:url(#default#VML);} st1\:*{behavior:url(#default#ieooui) } There is no where to say if your child has been unaffected. I have a daughter but she does not have it but I can not apply this. I am really interested in this poll, great idea!!! > > > ---------------------------------> > From: blepharophimosis [mailto:blepharophimosis ] > Sent: 21 April 2006 15:57> To:

blepharophimosis > Subject: blepharophimosis New poll for blepharophimosis> > > > Enter your vote today! A new poll has been created for the > blepharophimosis group:> > My family always thought that the male of the family was the carrier of this "special" gene as no female member had passed on the condition to their children. Now four generations on, I am the exception to that rule and am the first female to produce a child (daughter) with it, although my first born, a son did not.<p>> If alot of your family has it - which ones?> Do I need to add anything to poll? > > o Grandfather (Paternal) > o Grandmother (Paternal) > o Grandfather (Maternal) > o Grandmother (Maternal) > o Father > o Mother

> o Aunt (Fathers Side) > o Uncle (Fathers Side) > o Aunt (Mothers Side) > o Uncle (Mothers Side) > o Male Sibling > o Female Sibling > o Male Cousins > o Female Cousins > o You (Female) > o You (Male) > o Niece > o Nephew > o Your Child (Daughter) > o Your Child (Son) > o Your Child (Daughter) > o Your Child (Son) > > > To vote, please visit the following web page:> blepharophimosis/surveys?id=2207846 > > Note: Please do not reply to this message. Poll votes are > not collected via email. To vote, you must

go to the > web site listed above.> > Thanks!> > > > > > > > > > > >