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Old 03-04-2013, 09:44 AM   #5
Join Date: Feb 2013
Location: New York
Posts: 3
PK860 HB User
Re: collagen vi spectrum disorder

Hi again,

I'm glad the information about NIH is helpful! I highly recommend getting in touch, even if you don't visit right away.

I'm very lucky regarding IVF; my insurance is paying for pretty much everything. We are able to use my eggs and my husband's sperm (not too forward at all! when you undergo IVF, you let go of any squeamishness about these things very quickly!). What happens is, I undergo a typical IVF cycle. Then, when the eggs are fertilized, the clinic biopsies a cell from each embryo, which is sent for testing at a genetics lab. The lab tests each cell for the problematic gene, and then tells us which ones are not carriers (this is called PGD). We then can use the non-carrier embryos with far lower risk of passing on the condition. It's pretty amazing, but very stressful. IVF alone has no gaurantees, even if, like me, you have no fertility problems. And then PGD adds a whole extra layer of uncertainty. When it all goes smoothly though, it makes it 97% certain that we will not pass on the gene, which is far better than the 50% chance we'd otherwise have!

Things are improving so quickly with IVF/PGD technology; I'm sure it will be even better when you are at that point.

In your discussions regarding pregnancy with Bethlem, what have you learned? At this point, I'm very curious about how women manage in carrying the baby and delivery.


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