I disagree Re: EMBRYO TESTING

[Guest guest]

Hi all,

I would like to request that people continue to post appropriate comments on

proposed embryo testing or any subject related to BPES that will educate the

rest of us on all of our options. I take the suppression of speech very

personally and find it offensive and selfish. Our condition is not life

threatening, but some of us want to have a more human discussion or do not have

access to the elite doctors that others have and rely on the people in this

group to share their knowledge and aid us in evaluating both sides of an issue!

This website is for people who have BP, are affected by it, know someone

affected by it, want to discuss surgeries, every day life issues (such as having

children who may have BPES), and receive support or meet others with the same

issues. I would like to highlight that a statement like " Embryo testing should

be discussed with the relevant professionals in your own hospital time, " is the

equivalent of saying " God should be discussed with the relevant professionals in

your own church time. " If you're in support of banning one from this site then

it would be hypocritical to oppose banning the other.

BP causes some woman to have infertility at an early age and these woman are

faced with possibly NEVER having their own children. Undoubtedly this makes any

discussion of embryo testing an even more sensitive subject for these women than

it is for others. Please keep this in mind, as did in the original

message on this topic, when you raise it and be cognizant of others feelings.

The last people to mention embryo testing on this website were a couple of

doctors who appeared to be abusing their positions to their own advantage. This

sort of behavior is not permitted in the guidelines of this group which state

" the posting of messages with the intent to promote products and or services is

not allowed. " However, " the purpose of this group is to provide support, " and

just because your personal beliefs are different than someone else's does not

mean you deserve support or the right to express yourself, but they do not.

If anyone who can have children naturally and does not have infertility problems

caused by BP has struggled with the thought of having a child with BP, then why

not adopt one of the thousands of desperate children needing a home across the

world. That way you can know that your child will not have to undergo the

surgeries and harassment for it that you are concerned about. However, know

that for some of us those experiences were profoundly character building and

have enabled us to deal with more critical adversity later in life.

Please Please keep appropriate comments on embryo testing on this website until

it is specifically banned from discussion. If you want to discuss this, you

should be able to in an environment where others will help you explore BOTH the

pros and cons of the issue.

Thanks

e, a very proud mother with BPES and grandmother, mother and daughter who

have BPES who is against embryo testing

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Amen, and God bless you and God bless every person here on the BPES sight.

Terry

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From: miss <ssimtenaj (DOT) com>

blepharophimosis

Sent: Sun, November 22, 2009 8:33:43 AM

Subject: blepharophimosis EMBRYO

I could not agree with you more! I am the mother of a 19 year old son with BPES

and I couldn't imagine life without him. It is an insult to everyone on here to

suggest that he not be here or that I would choose to have a different baby

because of his condition. He may not have perfect eyes but he is extraordinary

in so may other ways. He is a much better person and will contribute more to

this world than many people that have " perfect " eyes. God chose him to be born

and I could not be more blessed.

Janet, NH

A very proud parent

When my daughter was diagnosed we were told that the chances were 50/50 for her

to have a child with BPES. BPES is a dominant trait which means only one

parent needs to carry the gene mutation/deletion to pass it on.

I would not change a thing about my daughter, but we have looked into her having

children. Once the location of the defective gene is located she could have her

eggs artificially inseminated and then the embryos tested for that defective

gene. This would provide an opportunity to screen for BPES and only implant the

embryos without the BPES gene mutation/deletion.

I am sure there are those of you that wouldn't agree with this. This will be a

personal decision for her to conceive naturally or go for the selective AI.

She is the one that lived through the 7 surgeries and the looking different so

only she can decide for herself, but she has up to date information and

procedures available to her should she decide to go that route.

Just know there are options out there.

> >

> >

> > In a message dated 11/7/2009 4:07:50 P.M. Eastern Standard Time,

> > smthg2smile4@ writes:

> >

> > > Hi my husband has BPES and we have a 3 year old daughter who also has

> > the condition and we are keen to start trying for a brother or sister for

> > her. What are the odds that we may have another child with BPES?