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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 18-03-12, 08:21 AM   #1
hanaB
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Default testing together

ok so heres the deal, im 21 this year and my sister is 18, she has always said she wanted the test and i always said that i would always wait for her to have it done so we had it together. is it a good idea that we have it done at the same time? i think im right in saying that we cannot be together when we have our results is this true?

hope you all you wonderful people are doing well xx
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Old 19-03-12, 08:16 PM   #2
Dolphin
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Default Re: testing together

Hi

When I first went along for testing I went with my sister.

But we soon found out that at the clinic they wanted to see us separately. And in some ways that is very good because you have your own reaction to things that come up. I found that what I heard I shared with her. But we both decided to leave it for a while.

When I did decide I really did want to know and I went back into the counselling and then on to get the results I took someone else with me. I was told I had to have someone who could make sure I got home in one piece as sometimes people just can't drive - (I'm not sure I would have been able to). I went to stay with my sister that weekend and she really helped me stay thinking positively.

I'm not sure we would both have found the strength to support one another if we'd both been going through the process at exactly the same time.

Let us know how you get on

Dolphin
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Old 20-03-12, 05:02 PM   #3
nixter5287
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Default Re: testing together

Hi,

I've started the testing process (had an initial conversation with the counsellor about family history, just waiting for an appointment to see the counsellor and the doctor together) - I was advised to bring someone with me to my first appointment....

It'll probably be up to the genetics clinic - all you can do is ask them

I was only told one rule - you can't get your results by yourself. You MUST have someone with you; they may not let that person be your sister if you are both getting results at the same time though.

Nic x
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Old 21-03-12, 08:32 PM   #4
Sparkle
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Default Re: testing together

Quote:
Originally Posted by hanaB View Post
ok so heres the deal, im 21 this year and my sister is 18, she has always said she wanted the test and i always said that i would always wait for her to have it done so we had it together. is it a good idea that we have it done at the same time? i think im right in saying that we cannot be together when we have our results is this true?

hope you all you wonderful people are doing well xx
Hi HanaB

I've just been through the testing process and unfortunately tested positive. My brother was tested just before me. He was a few weeks ahead of me. I would say that although its lovely that you want to be tested together remember that it is about you and you have to want it for your own reasons. If you tested positive and your sister negative you want to be clear in your head that you were tested for you and not her. I found that there are so many emotions that affect the whole family and that we all felt differently at different times. So it was nice for me to go to the hospital and be able to discuss things without upsetting other people. Having said that, sharing the same experience has brought my brother and I closer and it was good to be able to speak to someone who knew exactly how I was feeling.

Good luck with whatever you decide
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Old 21-03-12, 09:51 PM   #5
just1moreperson
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Default Re: testing together

Quote:
Originally Posted by hanaB View Post
ok so heres the deal, im 21 this year and my sister is 18, she has always said she wanted the test and i always said that i would always wait for her to have it done so we had it together. is it a good idea that we have it done at the same time? i think im right in saying that we cannot be together when we have our results is this true?

hope you all you wonderful people are doing well xx
Hi Hana,

Hope you are back in the UK by now

I spoke with a genetic counsellor about your post in order to get some insight. The counsellor stated that siblings can go through testing around the same time, but each has to have their own counselling sessions and receive your results at different times. So essentially you and your sister could get tested at similar times, but you would each go through your own individual testing process.

The other thing to remember is that the process can be extremely challenging emotionally at times. If you and your sister both received your results around the same time, that could be very difficult for you both trying to come to terms with your results and support each other at the same time.

Testing is something each individual has to be sure they want to do. You can still support your sister through her testing process without actually getting tested yourself, and visa versa.

Hope this helps and as always, I am here to listen should you want to talk about this further.

Matt
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