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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 12-11-12, 08:35 PM   #1
melissa21
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Join Date: Oct 2012
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Default Those that have tested positive...

For those that have tested positive for HD...
How do you cope? and how do you feel about your result?
Do you have any symptoms yet?

x
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Old 13-11-12, 10:33 PM   #2
waz1980
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Location: Crawley
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Default Re: Those that have tested positive...

Quote:
Originally Posted by melissa21 View Post
For those that have tested positive for HD...
How do you cope? and how do you feel about your result?
Do you have any symptoms yet?

x
I tested positive in jun 2011. Cope? Not sure I do but I still work, go on holiday, pay the bills etc. I'm 32 and still free of symptoms after a recent neuro exam.
I just await the day for effective treatments, gene silencing will be the 'cure' when it's available in the coming years after human testing, that's what keeps me going.
I cope better now that I did a year ago, but it was a long journey for me. I still get bad anxiety and depression at times.
I get involved with HD groups, conferences etc and help where I can. I try to be happy and make the most of my life.
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Old 14-11-12, 12:22 AM   #3
melissa21
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Default Re: Those that have tested positive...

Quote:
Originally Posted by waz1980 View Post
I tested positive in jun 2011. Cope? Not sure I do but I still work, go on holiday, pay the bills etc. I'm 32 and still free of symptoms after a recent neuro exam.
I just await the day for effective treatments, gene silencing will be the 'cure' when it's available in the coming years after human testing, that's what keeps me going.
I cope better now that I did a year ago, but it was a long journey for me. I still get bad anxiety and depression at times.
I get involved with HD groups, conferences etc and help where I can. I try to be happy and make the most of my life.
Hi, its great that you get involved with HD groups and that you feel better about it over time.

I hope you continue to have no symptoms for a very long time.

There is alot of potential treatments!! We can't give up hope :)

x
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Old 15-11-12, 03:33 PM   #4
DH
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Default Re: Those that have tested positive...

Quote:
Originally Posted by melissa21 View Post
How do you cope?
By burying my head in the sand most of the time

I tested non-symptomatic HD+ in 2007 (was it really that long ago?! ). I do all the research tests I can through my HD hospital (Addenbrookes) on the basis that it (a) helps the researchers do their stuff and (b) it puts me first in the queue when it comes to testing the drugs...

Coping on a day-day basis? By genuinely not thinking about it. That's why I don't post much on this forum these days... Anyway, what will worrying about it achieve? I've got the gene, big deal. In theory the disease will develop at some point if nothing happens in the drugs world but I sincerely believe that the work on gene silencing will start to see tangible results fairly soon, and like I say I'm first in line I hope...

But what else can I do? Nothing, so why worry? Can't change anything so there's no point getting het up about it. Nothings going to happen anytime soon, the sun will still shine and the birds will still be singing in the morning.

Groups and meetings? Yeah, they're great but I've not been to the London ones for ages, mostly due to work and other irritants, but the last one clashed with a decent band playing at the local pub. Tea, biscuits and chit-chat or beer and LOUD music...? Sorry, no contest


Edit: Many thanks to Admin for the really quick response!
__________________
Fetchez la vache.

Last edited by DH; 15-11-12 at 04:39 PM. Reason: Thanks added so I didn't have to press the "report post" button again!!
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Old 26-11-12, 07:24 PM   #5
Dolphin
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Default Re: Those that have tested positive...

Hi Melissa

It takes quite a while in my experience to come to terms with knowing that you are positive. Now I'm 5+ years on from having my test result.

It is a bit like any grief - at the start it is very raw - and then with the passage of time - it is still there, but you don't spend so much time dwelling on it and it has less power over you. But because it isn't going to just dull with time but you have to actually confront what it is like to be symptomatic, it remains a challenge.

I guess the secret must be to find a way to deal with it so you live your life positively. If there is a way to live life to the full and treasure the people around you without knowing your status, that is a good way to live too.

If I had thought for an instant that I was going to test negative, then I wouldn't have bothered testing. I was so convinced that I was going to be positive that it just seemed to be the time to find out for real.

Dolphin
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Old 09-12-12, 05:18 PM   #6
Laura83
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Default Re: Those that have tested positive...

It's probably a bit early for me to answer this question as I literally only just got my positive result.

But I wanted to say that although it's a difficult thing to process, it's not impossible. Yes it takes a lot of adjustment to come to terms with the diagnosis but I can see the light at the end of the tunnel.



Quote:
Originally Posted by melissa21 View Post
For those that have tested positive for HD...
How do you cope? and how do you feel about your result?
Do you have any symptoms yet?

x
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Old 21-12-12, 12:37 PM   #7
Eden
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Join Date: Sep 2012
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Default Re: Those that have tested positive...

Laura83 I hope you don't mind me saying so, but I truly am sorry to read you have tested positive. My thoughts are with you and I really hope you have lived ones to support you. I have started the process rolling by going to the doctor and they sentcan email to the genetic councillor people, so just waiting now for when I get the first appointment. Thoughts are with you Laura83.
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Old 03-01-13, 07:41 PM   #8
Dolphin
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Default Re: Those that have tested positive...

Hi Laura

How are you doing ?

Dolphin
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Old 04-01-13, 02:28 PM   #9
Vikkik86
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Join Date: Jan 2013
Location: Gloucestershire
Posts: 17
Default Re: Those that have tested positive...

Quote:
Originally Posted by melissa21 View Post
For those that have tested positive for HD...
How do you cope? and how do you feel about your result?
Do you have any symptoms yet?

x
I tested positive in Oct 2012. I am 26, and pre-symptomatic.
I have began to suffer from depression since getting my result, but with a lot input i am finding i am just going through the motions, up days and down days.
HD is very pronound in my family, my nan had it as did my uncle, and 4 of my aunts and my mum have it.
After the initial shock, you begin to realise that it doesn't make you a different person after testing, you just know you have it. All i can say is talking about it to others in similar positions really helps, and having a great care co-ordinator answers all the questions that you think about. :) xx
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Old 04-01-13, 05:55 PM   #10
Laura83
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Default Re: Those that have tested positive...

I'm well thank you Dolphin.

I still have days where I get upset but on the whole I'm well and glad to be myself.

Quote:
Originally Posted by Dolphin View Post
Hi Laura

How are you doing ?

Dolphin
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