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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 07-04-12, 11:55 PM   #1
nat
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Default Sister just got all clear, what do I do? Advice please

Hi Guys

My mother died of HD when I was 13.

I am now 28 and my sister is 32, she married 5 years ago. Yesterday she told me she was 16 wks pregnant - which is fantastic news and when she found out she was pregnant she was also tested for HD and got the amazing news that she is in the clear, so mum and baby are healthy.

But now I can't stop thinking if I have it, selfish I know. I've spoken to my dad and stepmum who are both so supportive and will be with me whatever I decide.

I guess I'd just like advice from people in the same boat and also some info on the testing process, what it involves, how long can it take from initial GP visit to results day and also if the counselling is helpful - are you prepared what to do should worse case scenario occur?

I would ask my sister but she says she doesn't want to talk about it, which is fair enough but I need to know.

Thanks Guys

xx
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Old 08-04-12, 03:18 PM   #2
dennisw
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Default Re: Sister just got all clear, what do I do? Advice please

Hi Nat,
If you go onto the HDYO web site there are articles about others experience of testing.
www.hdyo.org.uk

Dennis
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Old 09-04-12, 03:15 PM   #3
Trish
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Default Re: Sister just got all clear, what do I do? Advice please

Hi Nat,

Welcome to Messy Board.

It's sad that your sis can't chat things through with you but she may be fighting preggers hormones alongside a thing called 'Survivor's Guilt'. If she has been harbouring fear, it may be she is torn about how she should feel especially knowing you are still at risk.

As Jackie and Dennis rightly said, it's worth speaking to the HDA and looking through the HDYO website.

My own connection to HD is my late Hubs had it.
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Old 10-04-12, 01:34 PM   #4
krazykreat
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Default how do you do

thats Great thanks
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Old 10-04-12, 06:07 PM   #5
Dolphin
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Default Re: Sister just got all clear, what do I do? Advice please

Hi Nat

Speaking as someone who has tested positive for HD, it is more than essential to be able to get your head around every scenario !

The counselling can really help you find out if you're ready to know and help you identify what support you'll need if you're facing a similar situation.

Most people don't want to know, so also be prepared for your thoughts to change around a lot on this especially once you get more used to the idea of being an auntie.

My daughter went for the first steps of testing not so long after her brother tested negative last year, but she seems to have put it back on hold now. I think for my son the testing process took about 4-6 months.

Dolphin
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Old 12-04-12, 01:09 AM   #6
nat
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Default Re: Sister just got all clear, what do I do? Advice please

This is all great guys, thank you for your support and feedback.

GP referral made, just waiting to hear now, can't believe I might be going through with this!

x
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