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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 14-08-15, 02:07 PM   #1
Bell
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Join Date: Jun 2015
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Default Q's re: Guy's Hospital timelines

Hi everyone, I hope you can help with a few questions :)

Quick background, my hubby has a paternal uncle and aunt with the diagnosis and a paternal grandfather who had it. So far his father (65) is not showing any signs. We always said we wouldn't have kids as we didn't want to pass it on and hubby did not want to be tested. Now we've changed our minds about the kids and so have started down the IVF/PDG route. In addition, we've been advised to see a genetic counselor to discuss family history and the chances of my husband having it. This may or may not make him want to then be tested, and if not, we'll pursue the PGD route.

My question is, our referral to Guys hospital for an initial meeting went in this week. We have our next meeting re: IVF is in 3 months. We were hoping that within that 3 months we'd have seen the counselor at Guy's but I wondered if this was realistic?

How long do we have to wait for the letter/appointment? Does anyone know?
And if my husband decides he DOES want the test, does he have to go through further counselling (how long does this take) and then how long does it take to get the results if he goes ahead?

The reason for the rush is that we are both 39 at the end of the year and the cut off for IVF is 40 :( so we've no time to spare!

Sorry this is so long and many thanks in advance for any replies :) x
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Old 14-08-15, 06:02 PM   #2
Allan
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Location: Hastings, East Sussex, UK
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Default Re: Q's re: Guy's Hospital timelines

.
Hi Bell

I have no knowledge whatever of IVF\PGD – but I have several years of accumulated experience of dealing with many areas of the NHS by phone, email and face-to-face.

You and your husband are the patients, so the ball is in your court - YOU are in charge. If you can manage the situation then you can work it out in your favour. It should all be dependent on individual circumstances and situations. You have a timeline and you need to fit several procedures into that timeline.

I was in an almost unique situation [no family history of hd] - plus I had read up on the subject, ie all the stuff that is available on this Message Board. So, for my genetic testing, I had a one hour “counselling” session and then my blood was taken. I should think your husband could manage this fast-track route too as your schedule is tight. Also take along a sketch of his family tree [form here] - this all saves time and prompts the Counsellor to taken the fast-track lane too.

If I were you I’d phone the lovely people at Guys Genetics and explain your situation. It does seem that their clinics are monthly. You are both mature people who have, over time, made a decision and it now needs to be acted upon – for your “health, welfare and future happiness”.

Huntington Disease and Genetic Testing - it's Australian but one of the best I have come across.

You’re in charge – go for it.

Best wishes

.
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Old 14-08-15, 06:03 PM   #3
Jenny66
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Join Date: Jul 2015
Location: Kent
Posts: 45
Default Re: Q's re: Guy's Hospital timelines

Quote:
Originally Posted by Bell View Post
Hi everyone, I hope you can help with a few questions :)

Quick background, my hubby has a paternal uncle and aunt with the diagnosis and a paternal grandfather who had it. So far his father (65) is not showing any signs. We always said we wouldn't have kids as we didn't want to pass it on and hubby did not want to be tested. Now we've changed our minds about the kids and so have started down the IVF/PDG route. In addition, we've been advised to see a genetic counselor to discuss family history and the chances of my husband having it. This may or may not make him want to then be tested, and if not, we'll pursue the PGD route.

My question is, our referral to Guys hospital for an initial meeting went in this week. We have our next meeting re: IVF is in 3 months. We were hoping that within that 3 months we'd have seen the counselor at Guy's but I wondered if this was realistic?

How long do we have to wait for the letter/appointment? Does anyone know?
And if my husband decides he DOES want the test, does he have to go through further counselling (how long does this take) and then how long does it take to get the results if he goes ahead?

The reason for the rush is that we are both 39 at the end of the year and the cut off for IVF is 40 :( so we've no time to spare!

Sorry this is so long and many thanks in advance for any replies :) x
Hi Bell,
We are under guys and saw the counsellor pretty quickly, within a couple of weeks from the request being sent, we had another appointment about 3/4 weeks later and then she took hubby's blood and we collected the result 4 weeks later but that's cos we were on holiday. We started the process at the beginning of March and had the result beginning of June.
I have 3 sons in their twenty's who are considering IVF so as not to pass the gene on. We were told they can have IVF without being tested if they want, they re implant a healthy baby and ensure they don't have the faulty gene. We have our area co ordinator coming to us in a few weeks to talk through the options.
Hope that helps, I have the clinics telephone number if you want it
Jenny
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Old 19-08-15, 01:58 PM   #4
Bell
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Join Date: Jun 2015
Posts: 19
Default Re: Q's re: Guy's Hospital timelines

Thank you so much Allan, I really appreciate your response. I spoke with guys yesterday and explained we were also discussing IVF in parallel and so are up against it a little and they were as helpful as they could be. Rather than having to wait for our letter to arrive, they let me book an appointment over the phone - so we're seeing someone 25th Sept for an initial appointment. We'll take a family tree etc with us to save some time. I have no idea how my husband is going to react as that is very dependent on what the counsellor says BUT I do know that if he decides he wants the test, he'll want it quickly so it's a comfort to know there is the possibility to fast track this! Thanks again. These forums are so helpful!
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Old 19-08-15, 02:00 PM   #5
Bell
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Join Date: Jun 2015
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Default Re: Q's re: Guy's Hospital timelines

Hi jenny, so nice to hear from you, and thank you for the info. That's all very reassuring re: timeframes, thank you.

Best case scenario - my husband decides to get tested, is clear and we can get pregnant the old fashioned way!

if he decides not to be tested, we'll go down the PGD route and see what that brings.

Thanks again, really appreciate your feedback.
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