Re: BPES does not discriminate....

[Guest guest]

, te estas refiriendo a mi? porque si es asi no entiendo a que viene tu

actitud y me gustaria que me explicaras que es lo que te ha molestado porque

no era mi intencion y como el ingles tampoco es mi lengua a lo mejor me he

expresado mal, si es asi lo siento.

>From: " luis ortega " <lortega57@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: RE: blepharophimosis Re: BPES does not discriminate....

>Date: Thu, 12 Jan 2006 06:37:27 +0000

>

>Desconozco cual es tu lengua materna, al aprecer al no ser la mía el inglés

>no habéis entendido nada, quizás necesites tú más cultura, más lectura y

>más

>conocimiento. No tienes ni pajolera idea de quien soy lo que dejo de ser lo

>que leo y lo que dejo de leer. Si la blefarofimosis es o no es más

>frecuente

>en un grupo étncio no tiene nada de importancia para las personas que

>consideramos que todos somos iguales. Al aprecer alguno de vosotros no lo

>considerais así.

>

>

> >From: " minnielin202 " <minnielin202@...>

> >Reply-blepharophimosis

> >blepharophimosis

> >Subject: blepharophimosis Re: BPES does not discriminate....

> >Date: Wed, 11 Jan 2006 08:32:39 -0000

> >

> >,

> >

> >I'm not going to go into a battle of words with you. You are free

> >to express your feelings and thougths like the rest of us. What

> >bothers me is your attitude and your connection of psychological

> >disturbances to BPES.

> >

> >Don't you think we ALL have read and researched alot about BPES?

> >Don't you think we ALL have spoken to several doctors about BPES?

> >Never, have I heard of any doctor advising me of psychological

> >disturbances in the adolesence years due to BPES. Never in my life,

> >living with BPES, have doctors, nor Jasmine's doctors advised of

> >psychological disturbances in the adolesence years due to BPES.

> >Personally, I found this insane, idiotic and just plain stupid.

> >

> >Adolesence is no where near BPES. This is comparing apples to

> >oranges. Who in this group experienced perfect adolesence years?

> >Adolesence will be hard no matter if the child has BPES or not.

> >It's hard because it is what it is. Children in this stage are

> >going through many identity definitions. I did not have a good

> >experience during my adolesence stage but never would I blame it on

> >my BPES. It is what it is...adolesence. And to be warned of it due

> >to BPES...well, all I have to say is that I feel sorry for you for

> >having non supportive doctors advising you.

> >

> >It's true that one type of BPES does affect the woman's reproductive

> >system, but some of these women have accepted this fact and moved

> >onto welcoming the idea of adoption. And for those women who are

> >carrying the type of BPES that affects their reproductive system, do

> >you think they want to read or be told they have psychological

> >disturbances. It's like calling a mentally handicapped

> >person, " You're crazy! " to his face. A little discretion, please.

> >

> >You say you are positive, fine, I guess I can believe you.

> >However, you also have to face the real facts about adolesence.

> >Would you be concerned of your daughter's adolesence if she didnt'

> >have BPES?

> >

> >The facts are your daughter and my daughter will have a tough

> >adolesence years because that's what life is. Your daughter will

> >get teased in school because that's what children do. My niece and

> >nephews who have huge eyes often get teased. So are they

> >psychological disturbed? What's the reason for them to get teased?

> >Will they have tough adolesence years? Yes, because that's life;

> >that's reality. It's part of growing up. Why do you think there are

> >several books on adolesence? Or support groups for managing children

> >through the adolesence years? Same reasons why this group exists;

> >To educate, to support and to comfort each other.

> >

> >You want to prepare your daughter for these years and protect her

> >from the harm of adolesence? Well, you can do it by not believing

> >she will be pshychological disturbed. And finding yourself a new,

> >more supportive doctor won't hurt either.

> >

> >, your daughter and my daughter and the rest of this group's

> >daughers and sons WILL BE OK. I believe that our kids will have

> >normal lives. They are no different from big eyed kids. Your

> >daughter will be fine. The last thing you want to do is bring upon

> >your fear of psychological disturbances onto your daughter. Count

> >your blessings that BPES is the only thing she has (I'm assuming

> >this). And don't get too overwhelmed with the " facts of BPES " and

> >the psychological disturbances. Spend this energy in teaching your

> >daughter to smile at strangers who are staring and to talk about

> >BPES openly. Go to her school and teach her class what you have

> >read, minus what the doctors have been telling you. This little tip

> >was given to me from an experienced mom who both her and her

> >daughter has BPES and they are living happily ever after. Her child

> >is the happiest kid on the block. Do you think this child's BPES

> >is affecting her quality of life? No, and that's because her mom

> >didn't allow it.

> >

> >So, I look forward to your response with the pediatrics book you

> >have where it states BPES is more common among Asians. Perhaps, a

> >little less reading and more nurturing of yourself and of your

> >daughter may do you both some good!

> >

> >Min

> >

> >

> >

> >

> >

> >

> > > > > > > It's been a long time that I've visited this group and

> > > >recently I

> > > > > > > have been catching up on the postings. I just love this

> >group

> > > >and

> > > > > > > love how supportive all the members can be. Both my

> >daughter

> > > >and I

> > > > > > > have BPES, along with my father and 2 older sisters. We

> >wish

> > > >that

> > > > > > > this group existed during our time! I do feel fortunate

> >that

> > > >it

> > > > > > > exists for my daughter.

> > > > > > >

> > > > > > > Some of the postings I've read so far is a bit disturbing.

> > > >There

> > > > > > > are couple of postings where BPES is described to be

> > > > > > > a " disability " . Another posting wrote if it is related to

> > > >Asians

> > > > > >or

> > > > > > > even to orphans. Other postings go as far if BPES is

> >related

> > > >to the

> > > > > > > child's weight!

> > > > > > >

> > > > > > > I would like to say from experience, that BPES does not

> > > > > > > discriminate. It is not an Asian, nor an orphan thing.

> >It is

> > > >not

> > > > > >a

> > > > > > > disability. It is not a cause for low weights in children.

> > > > > > > Children with BPES are normal children. My daughter and

> >your

> > > > > > > daugthers and sons are normal kids. And BPES is really

> > > >nothing.

> > > > > >If

> > > > > > > we emphasize too much on the negative, then we are

> >teaching our

> > > > > > > children the wrong thing.

> > > > > > >

> > > > > > > What BPES is a genetic anomaly. BPES means small eyes.

> >BPES

> > > >means

> > > > > > > droopy eyelids. And BPES does not mean our kids will live

> > > >unhappy,

> > > > > > > unhealthy lives. I grew up happily with my small eyes and

> >so

> > > >will

> > > > > > > my daughter. BPES is cosmetic.

> > > > > > >

> > > > > > > I love how there are photos that show different races

> >across

> > > >the

> > > > > > > world. From US, Singapore, to Europe, to Australia. These

> > > >photos

> > > > > > > and families are our tools to teach our children with bleph

> > > >that

> > > > > > > they are not alone and that they WILL be ok. Perhaps what

> >was

> > > >once

> > > > > > > a " rare " disorder is no longer true. The growth of this

> >group

> > > > > >shows

> > > > > > > how we are not alone.

> > > > > > >

> > > > > > > So please believe in the positive of BPES and show your

> >kids

> > > >the

> > > > > > > beauty they possess in those little eyes!

> > > > > > >

> > > > > > > Merry Christmas to everyone in this group!

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

[Guest guest]

Rob W,

I send you two attached files on emotional distress in POF and a review

paper on ptosis: Read this one carefully becuase it states that

psychological impact may be very important for children.

Some parents are worried by fascia, wires in the nose and so on. To be

worried by the emotional distress that BPES can originate and to express it

is not trolling, perhaps you don´t want to discuss this item. OK, but

perhaps other people may want.

Regards

>From: Rob <r.watson@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis Re: BPES does not discriminate....

>Date: Wed, 11 Jan 2006 21:41:37 +1100

>

>,

>

>Whether you intended to or not, if you wanted to be seen as a " troll " ,

>you've gone the right way about it.

>

>For the less Internet-savvy folks in the group, a " troll " is defined as

>follows:

> " In Internet terminology, a troll is a person who posts inflammatory

>messages on the Internet, such as on online discussion forums, to

>disrupt discussion or to upset its participants. " Troll " can also mean

>the inflammatory message itself posted by a troll or be a verb meaning

>to post such messages. " Trolling " is also commonly used to describe the

>activity. "

>(http://en.wikipedia.org/wiki/Internet_troll)

>

>Trolling is explicitly forbidden on this group.

>(blepharophimosis/ - in red text)

>

>Note that I am quoting my sources. Had you done so, much of the outrage

>you have stirred might have been avoided. I urge you to either quote

>your factual sources sooner rather than later, or make it clear from the

>outset that you are expressing a feeling/opinion rather than

>facts/research. Or risk being seen as a troll, and then cop a thorough

>flaming.

>

>Regards,

>

>Rob W

>

>luis ortega wrote:

>

> > Hi,

> > I am afraid that you have misunderstood me. You of course can disagree

>with

> > me, perhaps you have not any psychological disturbance. I hope that my

> > daughter won’t have either. But some people may have it. I have read a

>lot

> > about BPES and I have talked with many physicians about BPES. All of

>them

> > have recommended me to be careful with my daughter because the

>psychological

> > impact than BPES may have on her during adolescence. I know that there

>are a

> > lot of girls and women in the group. I am sure, that specially for them,

>not

> > only cosmetics but some aspects of their reproductive life (POF,

>menstrual

> > alterations) may cause psychological stress and be, sometimes, very hard

>for

> > them. World Health Organisation about the state of health states that

>health

> > is not only physical, it is also psychological. For instance if a little

>boy

> > or girl is suffering because he or she is being teased or if a woman is

> > suffering because she can not get pregnant, they are in psychological

> > distress and they are not in a state of health. That don’t make us

>worse;

> > that make us human.

> >

> > If you find that I am sending negative messages you are wrong.

>

>No, you are sending messages that are being interpreted negatively,

>whether you meant to or not. The finders of those messages are not wrong.

>

> > I am writing, as other members of the group, of my feelings.

>

>No, you are presenting these " feelings " as though they are scientific

>facts (and with no substantiation). Feelings are fine, as long as they

>are presented and received as such, and not dressed up as

>(unsubstantiated) " research " .

>

> > If all the facts about BPES

> > were marvellous: if we wouldn’t be worried about surgeries, photophobia,

> > infertility, and so on, this group wouldn’t exist, because it would not

>be

> > necessary. We are here to help each other, to comfort each other and to

>be

> > sympathetic with other people that is like us. I like this group a lot,

>it

> > has helped me (and I hope that it will help me and more people in the

> > future), I remain positive for my daughter and for myself, that is the

> > reason why I prefer to face the real facts about BPES. Of course we can

> > choose how to manage our emotions. But emotions are that, and many times

> > they are really difficult to manage, specially in some times of life as

> > adolescence. To manage them correctly we must know well the storm of

> > emotions and psychological hurdles that our sons and daughters must go

> > through.

> >

> > I have read that BPES is more common among Asians in a book of

>paediatrics.

> > I have not the reference now, but I will look for it. Nobody of us is a

> > statistic number, but in epidemiological terms all of us are numbers,

>the

> > incidence and prevalence of diseases, malformations and so on are

>measured

> > in this way, and as you know the incidence and prevalence varies in

>diverse

> > ethnic groups. I am sorry if you have felt affronted by my words.

> >

> >

>

>

>

>

[Guest guest]

Quth the raven, " Que? "

Apprarently, something like:

" I do not know which is your mother tongue, [al aprecer al] not to be

mine the English you have not understood anything, perhaps need you more

culture, more reading and more knowledge. Do not you have any darned

idea of who I am, what I let be, what I read and what I let be to read.

If the blefarofimosis is or is not more frequent in an ethnic group

does not have anything of importance for the people that we consider

that all we are equals. When [aprecer] some of you not it [considerais]

thus. "

Keep digging, .

Rob W

luis ortega wrote:

> Desconozco cual es tu lengua materna, al aprecer al no ser la mía el inglés

> no habéis entendido nada, quizás necesites tú más cultura, más lectura y más

> conocimiento. No tienes ni pajolera idea de quien soy lo que dejo de ser lo

> que leo y lo que dejo de leer. Si la blefarofimosis es o no es más frecuente

> en un grupo étncio no tiene nada de importancia para las personas que

> consideramos que todos somos iguales. Al aprecer alguno de vosotros no lo

> considerais así.

[Guest guest]

Rob W,

this sentece is from the abstract of other paper I send you as attacched

file:

" The impact of POF on the patient is profound, with myriad ramifications,

ranging from psychological devastation to multi-system implications of

estrogen deprivation and its sequelae "

have you read it: psychological devastation

This is not a feeling or opinion is a scientific report.

>From: Rob <r.watson@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis Re: BPES does not discriminate....

>Date: Wed, 11 Jan 2006 21:41:37 +1100

>

>,

>

>Whether you intended to or not, if you wanted to be seen as a " troll " ,

>you've gone the right way about it.

>

>For the less Internet-savvy folks in the group, a " troll " is defined as

>follows:

> " In Internet terminology, a troll is a person who posts inflammatory

>messages on the Internet, such as on online discussion forums, to

>disrupt discussion or to upset its participants. " Troll " can also mean

>the inflammatory message itself posted by a troll or be a verb meaning

>to post such messages. " Trolling " is also commonly used to describe the

>activity. "

>(http://en.wikipedia.org/wiki/Internet_troll)

>

>Trolling is explicitly forbidden on this group.

>(blepharophimosis/ - in red text)

>

>Note that I am quoting my sources. Had you done so, much of the outrage

>you have stirred might have been avoided. I urge you to either quote

>your factual sources sooner rather than later, or make it clear from the

>outset that you are expressing a feeling/opinion rather than

>facts/research. Or risk being seen as a troll, and then cop a thorough

>flaming.

>

>Regards,

>

>Rob W

>

>luis ortega wrote:

>

> > Hi,

> > I am afraid that you have misunderstood me. You of course can disagree

>with

> > me, perhaps you have not any psychological disturbance. I hope that my

> > daughter won’t have either. But some people may have it. I have read a

>lot

> > about BPES and I have talked with many physicians about BPES. All of

>them

> > have recommended me to be careful with my daughter because the

>psychological

> > impact than BPES may have on her during adolescence. I know that there

>are a

> > lot of girls and women in the group. I am sure, that specially for them,

>not

> > only cosmetics but some aspects of their reproductive life (POF,

>menstrual

> > alterations) may cause psychological stress and be, sometimes, very hard

>for

> > them. World Health Organisation about the state of health states that

>health

> > is not only physical, it is also psychological. For instance if a little

>boy

> > or girl is suffering because he or she is being teased or if a woman is

> > suffering because she can not get pregnant, they are in psychological

> > distress and they are not in a state of health. That don’t make us

>worse;

> > that make us human.

> >

> > If you find that I am sending negative messages you are wrong.

>

>No, you are sending messages that are being interpreted negatively,

>whether you meant to or not. The finders of those messages are not wrong.

>

> > I am writing, as other members of the group, of my feelings.

>

>No, you are presenting these " feelings " as though they are scientific

>facts (and with no substantiation). Feelings are fine, as long as they

>are presented and received as such, and not dressed up as

>(unsubstantiated) " research " .

>

> > If all the facts about BPES

> > were marvellous: if we wouldn’t be worried about surgeries, photophobia,

> > infertility, and so on, this group wouldn’t exist, because it would not

>be

> > necessary. We are here to help each other, to comfort each other and to

>be

> > sympathetic with other people that is like us. I like this group a lot,

>it

> > has helped me (and I hope that it will help me and more people in the

> > future), I remain positive for my daughter and for myself, that is the

> > reason why I prefer to face the real facts about BPES. Of course we can

> > choose how to manage our emotions. But emotions are that, and many times

> > they are really difficult to manage, specially in some times of life as

> > adolescence. To manage them correctly we must know well the storm of

> > emotions and psychological hurdles that our sons and daughters must go

> > through.

> >

> > I have read that BPES is more common among Asians in a book of

>paediatrics.

> > I have not the reference now, but I will look for it. Nobody of us is a

> > statistic number, but in epidemiological terms all of us are numbers,

>the

> > incidence and prevalence of diseases, malformations and so on are

>measured

> > in this way, and as you know the incidence and prevalence varies in

>diverse

> > ethnic groups. I am sorry if you have felt affronted by my words.

> >

> >

>

>

>

>