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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 16-01-16, 01:29 PM   #11
Ashyrose7
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Join Date: Nov 2015
Posts: 29
Default Re: Big decision

Hello.
I know I want to be tested but she seems so set on changing my mind, she's doing my absolute swede in if I'm honest. As I've said before it was not an easy decision and I've waited three years so I could make sure I absolutely do want to know, yet she still wants to change my mind.
I just had the letter back from appointment 2 and part of it reads

'If following this appointment both you and Dr Fletcher feel that it is the right time for you to go ahead with testing we will arrange a further date for you to see me at which blood can be taken. Results will take 3-4 weeks. ALTERNATIVELY WE CAN MAKE ARRANGEMENTS TO RE MEET IN SIX MONTHS OR A YEAR' is she completely deaf? What difference does six months or a year make?! I'll just have to go through all the appointments and endless repetitive questions and she'd still probably try and make me wait.. It'll be a never ending story..

I AM going to find out and she WILL not change my mind.. Stupid woman

Sorry for the rant the letter rattled my cage this morning

Ashy x


Quote:
Originally Posted by Anastasia View Post
Hi Ashy,

When I went through my testing the counselor tried to talks out of it too. I knew I wanted to be tested. I don't have children nor am I going to, but I had to know for myself. I was so confident I was ready when I met with the psychiatrist we were laughing and joking - it was that relaxed!

There is no way anyone can tell you what is right, you have to be mentally prepared. It is hard living at risk, you are always wondering and a lot of people do not understand what you are going through unless they have gone through it themselves. Finding out may be easier because there is no more uncertainty. If you are positive you can plan for the future and do things that you may not be able to do later in life. If you are negative then you will be relieved. :)

I am thinking about you and hoping for the very best! Xoxo
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Old 17-01-16, 11:43 PM   #12
N88
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Join Date: Jan 2016
Location: UK
Posts: 8
Default Re: Big decision

Quote:
Originally Posted by Ashyrose7 View Post
Hello everyone.
I have posted a few times on the young members thread but thought I'll try posting here too as new advice is always good.

My maternal grandmother had HD. She passed away in 2012. When she passed away my mother got very upset saying she would of never had children if she knew HD was in the family because she couldn't live with the guilt of passing it down etc etc.
I have thought long and hard about it and have decided I want to be tested for HD. The difficulty being if I am found to have it, that means my mother has it to and she does not wish to know. I am currently 2 appointments in to predictive testing, and providing the session with the psychiatrist goes well I could know my result by the end of March.
The counsellors seem to be trying to persuade me to wait a few years before I find out on the basis that I'm quite young at the moment (I'm 22) and there is no real 'rush' because if I do have it I won't start showing symptoms until my late 50's early 60's (My grandmothers CAG count was 39) whilst I appreciate what they're saying I also feel that they're not really listening to me and they think I'm quite naive. They are very patronising.
It has taken me three years to finally get the courage to be tested for HD and I think they feel like i've 'rushed' the decision when it's been anything but rushed.

I guess my question is: What would you do in my situation. Would you continue with the testing process knowing you might have to keep a secret from your mother for years and years? Or would you carry on and be strong for your own peace of mind.

Thanks for reading

Ashy
x
Hi Ashy,

As u know I'm in the same boat as u from my previous post. My mother hasn't been tested and doesn't want to know but I'm seeing the counsellors at the moment. I hope it all works out, I think if u know at least u know! If negative u spare ur kids all this stress and greif. Do let us know the outcome x
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Old 17-01-16, 11:48 PM   #13
Ashyrose7
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Join Date: Nov 2015
Posts: 29
Default Re: Big decision

Hello!
Isn't it so nice, in a way, to find someone who's in the same boat as you? I certianly feel less alone than I did before
I hope it works out for you too.
I need to know, there's no way I can't know now..
I will do
Thank you xx

Quote:
Originally Posted by N88 View Post
Hi Ashy,

As u know I'm in the same boat as u from my previous post. My mother hasn't been tested and doesn't want to know but I'm seeing the counsellors at the moment. I hope it all works out, I think if u know at least u know! If negative u spare ur kids all this stress and greif. Do let us know the outcome x
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Old 09-02-16, 02:02 PM   #14
ChelseaMark
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Join Date: Nov 2014
Location: London
Posts: 9
Default Re: Big decision

I think from what you've written that you've already decided you want to know. Your mother has every right to her own decision but that should not dictate yours. First, get the result and let's hope it's an all clear, in which case you can break some good news. If it's bad news, well then you can absorb, make your own decisions and then either inform your mother or choose to keep it to yourself. I would not dream of telling you what to do, but personally I advocate the truth. But that's just my take on it and I simply add that to the mix.
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