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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 13-09-14, 10:15 AM   #11
Amanda Stansfield
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Location: Pendle Lancashire
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Default Re: The test

Oh sweetheart I'm so sorry x
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Old 13-09-14, 09:03 PM   #12
banda
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Sorry to hear your news....take each day as it comes....emotions can be tricky. One bit of advice we found useful is that the only difference between yesterday and today is the diagnosis...... Thinking of you.
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Old 15-09-14, 12:08 AM   #13
Turntable
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Default Re: The test

Hi guys

Thanks again for you kind words. Being tested positive for huntingtons is not at all like I imagined, I feel like I have a chance to do all the things that are important to me and really appreciate what's good about life.

I have been taken back by everyone's support, I really don't deserve it, but it has certainly helped along the wa

Thanks

Lt
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Old 20-09-14, 07:39 AM   #14
toosh
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Quote:
Originally Posted by Turntable View Post
Hi guys

Thanks again for you kind words. Being tested positive for huntingtons is not at all like I imagined, I feel like I have a chance to do all the things that are important to me and really appreciate what's good about life.

I have been taken back by everyone's support, I really don't deserve it, but it has certainly helped along the wa

Thanks

Lt
Hi TT

I am gutted for you. but I love your positive attitude.

I had the same conversation with my husband the other day that HD has had a positive affect on our lives. Knowing there was a 50/50 chance of him having the disease has spurred us on to do as much as we could.

We have been fortunate to know about HD since his father died in 1995. Nothing ever prepares you for the shock of knowing that you are at riske but we have been able to travel virtually around the world and had HD not been lurking in the background I'm not sure we would have pushed ourselves to do the things we have done.
I know its hard to have any positive thoughts about HD. At least you know what the future holds and you can make the most of EVERY day.


Big hugs
Toosh
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Old 18-10-14, 10:51 AM   #15
Serena
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Join Date: Oct 2014
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Default Re: The test

Hi, do you regret getting tested? Not knowing should mean not thinking about it but it's a constant loud. Sorry about your result. I think I'm going to because I'm a parent.
S
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Old 19-10-14, 07:56 AM   #16
Joseharry
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Location: Crayford, Kent
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Default Re: The test

Hi Serena,
Welcome.
Even if you are just considering testing you would have to go through genetic counselling first. I see that you are in London, so you could ask your GP to refer you to the National Hospital For Neurology and Neurosurgery where they have specialist clinics. ( far better than going to a Local General Hospital where they rarely have any Idea about HD)
There are set protocols to work through before you make your decision
re testing .
Perhaps just getting the ball rolling will ease your mind a little.
Just bear in mind that being referred is just part of the process and the final decision re testing will be yours.
I wish you the strength you need Serena,
Brenda.
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Old 20-10-14, 02:01 PM   #17
Serena
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Hi Brenda, I have just had my third counselling session. Fine with going ahead with test. Want to up my life insurance/ critical illness cover before testing in case its positive but can't see HD listed as a critical illness covered... Any ideas on this?
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Old 20-10-14, 03:08 PM   #18
Serena
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Default Re: The test

Quote:
Originally Posted by Joseharry View Post
Hi Serena,
Welcome.
Even if you are just considering testing you would have to go through genetic counselling first. I see that you are in London, so you could ask your GP to refer you to the National Hospital For Neurology and Neurosurgery where they have specialist clinics. ( far better than going to a Local General Hospital where they rarely have any Idea about HD)
There are set protocols to work through before you make your decision
re testing .
Perhaps just getting the ball rolling will ease your mind a little.
Just bear in mind that being referred is just part of the process and the final decision re testing will be yours.
I wish you the strength you need Serena,
Brenda.
Thanks Brenda, I have actually had my third counselling session and want to increase my life insurance prior to testing. HD not mentioned among the 41 illnesses mentioned. I know you can't test then increase it. Is it covered - does anyone know about this?
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Old 20-10-14, 06:05 PM   #19
Joseharry
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Join Date: Oct 2013
Location: Crayford, Kent
Posts: 250
Default Re: The test

Hi Serena,
I am sorry, I was unaware that you have already had some counselling. I have no real knowledge re your insurance question...perhaps one of the others can help you with that one.
Once you find out please share, we all need as much info as possible to help us in our daily struggles with the powers that be!
Good luck,
Brenda
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Old 29-10-14, 09:01 PM   #20
DH
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Default Re: The test

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Originally Posted by Turntable View Post
Being tested positive for huntingtons is not at all like I imagined, I feel like I have a chance to do all the things that are important to me and really appreciate what's good about life.
Hi Lt, it's a bummer isn't it, being tested HD+? When I got my result I spent the next six months on a gradually easing emotional roller coaster... One day I'd be fine and the next I'd be in bits. But that was seven years ago, and now? Sometimes days go by and I don't even think of it. Which is why I've always said that the only difference getting the test result has made is that I now have a little bit more knowledge...
Everyday the birds are still singing and the sun is still shining
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Fetchez la vache.
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