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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 27-07-08, 10:08 AM   #51
frankie
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Hi DH

I am sorry your sister has tested positive. How are your parents feeling? I wasn't sure if your dad knew about you already, but you were trying not to worry your mum? A shock to many in the family then now?
Take care
X
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Old 27-07-08, 02:19 PM   #52
just1moreperson
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i've just been speaking to Matt on MSN (at 2:20am - That guy doesnt sleep!)
Cheeky lil baaaaasturd

Dave sounds like an eventful evening. Let your sis know we are all here to chat if she ever feels like it.
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Old 27-07-08, 02:51 PM   #53
lucyloo
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Hi DH
Sorry you had such a bad evening.
TC Lucy
OK Pat I am at risk found out last year, didnt know we had HD in family as dad died young of something else, I have 2 kids and my sibling has 1.
Am having genetic counselling at mo, not sure I want to know though.
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Old 27-07-08, 03:40 PM   #54
Patrick
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How did your Mum take it? Curious, as I wasn't going to tell my Mum if my result comes back Positive. Some people agree and some don't.
Im also making the same hard decision, ive opted not to tell her as she's just seen her partner of 40+yrs go through the whole HD saga and finally die. When I weigh up the pro's & con's of telling her im HD+ (if thats what the results come back with on Wed) the pro's list is a hell of a lot shorter than the con's..

Pro's
- The truth is out there - You'll be able to talk to her openly about HD in your life

Con's
- Broken Hearts - You'll break her heart if she knew her little baby had HD
- Guilt - She'd feel guilty to some degree, especially if she brought you into this world knowing about HD in the family
- Weirdness - Once you've told her theres no going back, your relationship might change, like she may be constantly sympathetic, or just act differently around you
- Ignorance - Ignorance is bliss, if you DONT tell her then life continues as normal, if you dont have any symptons while she's alive then that means she's lived her life without having unnecccessarily worried about HD for 1 day..

Then off course there is that 'over-ridding' rule to all of the above that goes something like this...

- Parents always need to know EVERYTHING about their kids no matter how distressing, and its your duty to tell them

Being a parent myself... it would absolutely shatter my heart into thousand of little pieces if I knew that either 1 of my princesses, but [/INSERT_OVERRIDING_RULE_HERE] i'd still want to know

Saying all that, i'm still not going to tell mine
If anyone knows any other pro's and con's that ive not mentioned pls let us know.
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Old 27-07-08, 03:52 PM   #55
Patrick
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OK Pat I am at risk found out last year, didnt know we had HD in family as dad died young of something else, I have 2 kids and my sibling has 1.
Am having genetic counselling at mo, not sure I want to know though.
I'd say do it when you feel ready, I waited 12 yrs before I got tested and the ignorance is bliss, but ignorance cant last forever and after a while your going to want to know if you fell over because you were tired or because you were symptomatic, we all have different ways of dealing with things some people need to know asap and cant face the prospect of waiting and doing so only delays the inevitable, but if you are one of these people then you'd need to figure out what your going to do with this information, and if your mentally prepared for the implications.
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Old 27-07-08, 04:17 PM   #56
Patrick
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And if you want more Pat you'll just have to pay. JP Morgan eh? That HAS to be worth at least a £10 donation I reckon just for that bit there? hehehehe

Trish xx

http://www.justgiving.com/daintytrish
Yep Trish your right, I reckon it was worth a tenner, so i've donated to the link on your pimp my blog post :)
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Old 27-07-08, 05:45 PM   #57
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Hi Pat
Just wanted to say welcome.I lost my mum to hd on 2nd april 2008 and like you i thought ignorance was bliss ,im now starting testing process on 7th august welcome
Angela
xxxx
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Old 27-07-08, 05:52 PM   #58
Patrick
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Hi Pat
Just wanted to say welcome.I lost my mum to hd on 2nd april 2008 and like you i thought ignorance was bliss ,im now starting testing process on 7th august welcome
Angela
xxxx
Thanks and Good luck on your test results.
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Old 27-07-08, 05:58 PM   #59
DH
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I live in Romford,
What d'ya wanna do a stupid thing like that for?! Romford? Sheeeesh!

For my own sins I spent the first 10 yrs of my life in Ilford, then another 12 in Upminster, the rest in Epping and where I currently am in Loughton.

Of course what it does mean is that when you're back over here we can hook up for a beer or 3.


And thanks to everyone for their kind words about my sis and mum. It's a kinda work in progress, so I'll add more later on. Suffice to say that I keep getting a lump in my throat and welling up... most unbecoming.

Oh, and I want to say a public Thank You to Trish who has been very supportive to me over the whole thing - Trish, you might call yourself a bitch but you really are one of life's Good People. Thanks.
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Fetchez la vache.
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Old 27-07-08, 07:41 PM   #60
Patrick
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What d'ya wanna do a stupid thing like that for?! Romford? Sheeeesh!

For my own sins I spent the first 10 yrs of my life in Ilford, then another 12 in Upminster, the rest in Epping and where I currently am in Loughton.

Of course what it does mean is that when you're back over here we can hook up for a beer or 3.


And thanks to everyone for their kind words about my sis and mum. It's a kinda work in progress, so I'll add more later on. Suffice to say that I keep getting a lump in my throat and welling up... most unbecoming.

Oh, and I want to say a public Thank You to Trish who has been very supportive to me over the whole thing - Trish, you might call yourself a bitch but you really are one of life's Good People. Thanks.
I lived in East Ham until I was 8, then moved to Ilford until I was 21 and have lived in the Romford area ever since, I know loughton and epping very well I use to go biking up there and visit me mother in law who lives in that neck of the woods in High Beach. We will most definitely meet up for a beer or 3 when im back
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