More parental and HD stress

I'd put off seeing the genetic specialist who'd already seen my sisters. I just couldn't face another appointment, got sucked into other things, kept telling myself it'd be ok.

But my thoughts have been turning to another IVF round and I thought I better find out what exactly the score was with being a donor, recieving eggs, embryo testing and so on.

A lot of what I'd been considering was - and I realise this is going to sound stupid - based on what my parents told me. That although my sisters and I were at risk of carrying HD, it'd only manifest itself in our late 70s, and take another 20 years to kill us. And that, if we were carriers, and our children also inherited the gene, they would get it at the same age we did.

Except, that turns out to be only half right. While my Dad has a mild form of HD, HD is more likely to become stronger if you inherit it from your father than your mother. So if one of us does carry it, it could appear in our 40s.

Which obviously means doing an egg share is a complete non starter.

Things then got a bit frustrating with the genetics man, who I think already thought I was weird; admittedly, years of infertility does change your boundaries when it comes to fertility treatment.

I asked if we could get pre-implantation genetic diagnosis (ie, the embryos get scanned for HD before being transferred).

He said we couldn't in the UK as we already had a child. He said we couldn't. I thought he meant on the NHS, as it is very rare for health boards here to fund someone who already had a child.

I thought this was kind of bizarre, and so asked if we could get PGD privately. He said no, "they" thought it would be unfair if one child had been cleared but not the other.

I then asked about getting it abroad. The guy looked a bit weirded out and waved his arms, saying it would be very expensive and difficult to get (which, frankly, seemed a bit odd; I've read enough about IVF to realise that some countries have very liberal laws about donations and screening).

I can do a test that, if I don't have HD, would clear me to go down the original egg sharing route.

If I do have HD I can find out, practically to the year, when it will onset. Which means I'll roughly find out when I will die, too.

I'm not really sure what to do. In some ways, if I was going to have it at 40, then I'd rather know now so I could get around to writing my novel, stop spending on a pension and try to enjoy life more. I could practically advance book my ticket to Switzerland to be euthanised (if I do have it, I'm fucked if I'm hanging around until the bitter end, choking on cranberry juice in a home somewhere, smelling of wee).

But then, I'm not sure how I'd cope with having the certainty of  HD. Depending on how strong the gene is, it becomes problematic to buy a house as nobody wants to lend money to someone who isn't going to be around in 25 years.

Perhaps most importantly, if I get the test and know, then the Boy will know he has a 50:50 chance. At the moment he has a 25% chance of having HD, and I feel those odds are more comforting.

Having thought about it and done some light research, it appears that the genetics man wasn't entirely familiar with IVF abroad; I've found clinics where IVF with PGD can be done for less than a regular cycle here.

 I think I'm inclined to want to do a PGD cycle abroad, which would eliminate HD, although I don't think I'd want to know if I was a carrier.

I think my husband thinks it would make sense for me to get tested before we do that, which could bring the egg sharing option back into play.

I might need to try and get some expert advice from somewhere - I think the genetics people probably aren't too familiar with IVF, but my normal sources of infertility information don't have much on genetics.