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Hi all

Adding polls to the site is a great way of getting information. Please do

feel free to use it. However, I think it is really important to make a point

about this poll.

The “50% chance of passing on BPES†question is hard science. This

information has been known for years. The way that medics/scientists know

this fact is based on the fundamentals of genetics.

So – this question may mislead readers of this group into thinking

otherwise.

For this reason I am going to close it. I hope that you will understand

that it is soooooooo important to avoid conveying misinformation …

especially to all the new members of the group, who have not yet time to

learn much about BPES, and are wanting answers – good answers, which are

backed by science. I have contacted a doctor who is a member of this group.

She has confirmed this, and agrees that this poll (as stated) can mislead.

BUT PLEASE READ ON …

BUT – I am wondering if the persons who made this question (original

question below in green) may like to modify it slightly …

Question

If you or your spouse have BPES, and you have Children, do you believe there

is really a 50/50 Chance of passing on the gene, related to YOUR number of

children affected? If not do you believe there is more or less then 50%

Chance?

* I believe there is more then 50% Chance

* 50/50 seems to be correct in our family

* I believe there is less then 50% Chance

Suggested modified / better question.

If you or your spouse have BPES, and you have children, please let us know

how many of them have BPES.

We have only 1 child, Our child does NOT have BPES

We have only 1 child. Our child does have BPES

We have 2 children. Neither have BPES.

We have 2 children. 1 child has BPES, the other does not.

We have 2 children. Both children have BPES.

We have 3 children. None of our children have BPES.

We have 3 children. Just 1 of our children has BPES.

We have 3 children. 2 of our children have BPES.

We have 3 children. All 3 of our children have BPES.

And so on ….

Would people like me to do that?

Regards

Shireen Mohandes

London England

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