Re: the poll recently added

[Guest guest]

I like your idea Shireen as I am quite informed about BPES but was a bit confused regarding the poll just because the "scientific" facts states there is 50/50 chance, etc Tonikka & Chrisneed a photographer?tmareephotography.comtmareephotography.blogspot.comspecial occasion? wedding?updotoyou.com On 13-Jan-09, at 1:40 PM, Shireen Mohandes wrote: 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 <winmail.dat>