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  • "kateyliz" started this thread

Posts: 17

Reg: Aug 2nd 2010

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Monday, August 2nd 2010, 1:47pm

Genetic counselling

Hi All

I thought I might ask here for some advice on things to ask as I am new to all this.

My husband has a 50:50 chance of having Huntingtons and we have an appointment with a genetic counsellor next month. It is primarily to decide whether he is going to have the test to see if he will develop the disease.

We also want to have children - we had been trying naturally but not conceived (I think it is fate!) and since speaking with my sister in law who has recently conceived via PGD we had decided to stop trying and ask about going down this route. The Doctors ran hormone tests on me and said no reason not to get pregnant so that's promising :)

I'm assuming you have all been here at some point and wondered if you had any advice you can give me and how you coped with waiting, and if you don't mind me asking if you found it easy to get funding as I don't know how we would afford it otherwise as heard it can cost around 7.5K!

Thanks for your time.


Posts: 882

Reg: Dec 25th 2009

Location: London

Children: One Angel son 15.5.11 and a Rainbow baby son 13.10.12

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Monday, August 2nd 2010, 11:28pm

Hi Katie, welcome to FZ :hugs:

Sorry to hear you may need PGD, it's not an easy thing to contemplate but plenty of people have got their happy endings with it, which is good.

DH and I saw PGD genetic counsellor but have never actually had an appointment with someone who specialises in our disorder - my dad's affected and can pretty much tell us what we need to know whenever we ask and even if we don't!

There are definitely some clinics that can test for Huntingtons, and if your DH decides not to have the test I think there may be the option of going through PGD without your husband having to find out if he carries the gene or not. The down side to this is that you may end up having PGD without needing it, if he hasn't inherited the gene. I would definitely ask the counsellor if they are affiliated with any PGD clinics so you can ask them treatment related questions - it may depend on whereabouts you live. There are a few well known clinics in London such as Guys which does a lot of PGD, and CRGH but I don't know if they test for your disease.

Our funding situation is a little messed up at the moment - our clinic (CRGH) has to wait for a bit before applying for funding for our disorder due to the PGD consortium always turning them down, but it seems from the ladies I've spoken to on here as if Guys is a bit better on the funding front - it can still take a few months though...

I wish you the best of luck, feel free to join us on the PGD chatter page if you'd like, others may be able to help more than me :).

1 fresh + 1 FET PGD
1 angel in heaven, 1 here

Posts: 1,193

Reg: May 30th 2010

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Wednesday, August 4th 2010, 4:21pm

Hi Katie,

I am very sorry for your situation it is not an easy one. But I am sure the love between you two makes up for it [zx127]

I have similar informations as Hopeful. In case of Huntington's you can even have PGD without knowing for sure. It is probably because this desease is not very nice and it is also on the exact gene location for every HD person (this I don't know only my assumptions). I think it is a very difficult decision and only you as a couple can decide whether you want testing or not. There are pro-s and cons for both I am sure you talked a lot about it. If you decide to go ahead with PGD without knowing the doctors will actually get to know your husband's gene status but they are not allowed to tell.

But as far as I know you are entitled to get the funding in both cases, though it might depend on your location too.

I was never in the same situation as although my husband is carrier of a similarly dominantly inherited disease in this case the mutation is different between families so we had to know his gene status before commencing treatment. We knew it anyway through other examinations so it was not a shock (although naive me hoped all the time it might not be as his symptoms are luckily very-very mild at the moment)

Good luck and feel free to pop in to the nearby thread for a friendly chat :)

Good luck for your consultation and allow it plenty time. There will most likely be quite a lot of waiting afterwards. Even if you are quite sure what you want to do you might have to have several appointments before being referred for PGD.

x Rianon

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