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dyza
06-02-2006, 04:56 AM
Can anyone here tell me of their expeirences with the gentic counselors, what it entails? We have a good understanding of genes, and how our son has his from us. So my question is what else is there to tell? Will we be wasting our and their time. Obviously it may be different from country to country, so experiences from the UK, esp Scotland would be really good, but feel free to let me know ,even if you are from anywhere else. Thank you.

eli
06-02-2006, 09:47 AM
Hi Craig,

We have spoken to our genetic councelor a number of times, and from what i can recall the only thing we disgused was how Olivia came about to have CF, the genetic side of things which you probably already know ie: what were her chances of hving/not having CF, having other children. Such as what optionsa are available to us, when we want to have another child, having other family members tested, that are planning on having children, family histiory and family tree. She jotted all this down for her record.
Um, and also mentioned a little info on gene therapy and other means of future treatments and cure (whci i don't forsee in my lifetime). But i hope i'm wrong.

Sorry if i'm not making sence, i'm a little tired but wnated to answer your question.

Hope this helps.

anonymous
06-02-2006, 10:39 AM
I was told when we found out that my niece had cf there was a good chance they would find a cure in her life time. you are only 26 years old hopefully you will live well into you 80's that is over 50 something years...I think they will have a cure by then...atleast something that would make this diease very managable.
I think they said that are already very close to finding one...I am not getting my hopes up but I am trying to stay optimistic. You have a beautiful daughter to live and hope for a cure...please don't give up hope.

As for the gene therapy...do you know the gene mutations of your son? I'm sure it would be finding that out...then as time goes on different treatments for those genes...keeping you updated and studing what happens to people as time goes on with different gene types...just a guess though