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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 11-02-13, 09:29 PM   #1
Wrighty
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Join Date: Feb 2013
Posts: 2
Default How long does the test and counselling take?

I am going through a divorce and haven't been in touch with my parents for many years. On getting back in touch I have discovered my dad is 80% sure of being diagnosed with hd although he's is in denial and has not taken the test. As a result I have already had three kids and I have spoken today with my GP and has made a referral through to st Mary's hospital in Manchester.

I work in mental health services anyway and have had more experience caring for elderly with Parkinson's and dementia and now work with adults with learning difficulties and have had more cbt than you can shake a stick at.

I am adamant I want to find out not for me but for the sake of my children so I can make informed decisions on their testing and they in turn can make life decisions that is already too late for me.

How long does the consultation and testing process usually take?
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Old 12-02-13, 08:06 PM   #2
Dolphin
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Join Date: May 2008
Location: Surbiton
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Default Re: How long does the test and counselling take?

Hi

When my son tested, 2 years ago, it was quite a brisk process - 3-4 months, but then he fairly much knew about HD, having got used to the idea over about 15 years, that his gran was ill with it and not very far off the end of her life at that time. He was thinking seriously about becoming a dad himself.

On the other hand, when I tested, it was very fresh for the family, and the counselling process was really useful to let off steam and find out more. I did go ahead with testing, but with several big gaps between appointments.

In the end, although my start motivation was to do with my children, it is such a big thing, that you need to be sure in your own mind that you do want to know. It isn't something that you can "unknow" if you understand what I mean !

Hopefully someone who is based in Manchester can give you a more accurate idea of the testing process there.

Good luck

Dolphin
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Old 12-02-13, 08:44 PM   #3
Wrighty
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Default Re: How long does the test and counselling take?

Why is the process so long and I can't understand why to have counselling before the appointment. It just seems daft to have counselling before having the results if your test turns out negative adding to the stress and worry of having to wait.

I can fully understand counselling afterwards if the test result is positive. If someone had another terminal illness such as cancer for which there was no cure just like hd they would receive counselling first?

At the end of the day whatever my test result it really doesn't bother me life is life ill just probably live a bit harder now no matter what and make the most of it. My primary concern however is my children and if I'm positive how my kids can make decisions to eradicate the faulty gene. Would this be taken into account to speed up the process?
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Old 13-02-13, 04:29 PM   #4
angecornwall
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Join Date: Sep 2009
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Default Re: How long does the test and counselling take?

Quote:
Originally Posted by Wrighty View Post
Why is the process so long and I can't understand why to have counselling before the appointment. It just seems daft to have counselling before having the results if your test turns out negative adding to the stress and worry of having to wait.

I can fully understand counselling afterwards if the test result is positive. If someone had another terminal illness such as cancer for which there was no cure just like hd they would receive counselling first?

At the end of the day whatever my test result it really doesn't bother me life is life ill just probably live a bit harder now no matter what and make the most of it. My primary concern however is my children and if I'm positive how my kids can make decisions to eradicate the faulty gene. Would this be taken into account to speed up the process?
Hi Wrighty and welcome to the board!! I've seen a post like yours before and all I can say is just take time with everything, and at the end of the day, your kids will do what they want, when they want, regarding testing because it can't be done until they're 18 anyway.... I'm at risk, my father died of HD last year, we didn't know it was in the family, I've been referred to the genetic counsellor for testing, but had to change my mind whilst waiting for the next counselling appointment because my father took a serious turn for the worse (obviously before he died) and I could not deal with all of the problems with him as it was, let alone me and my family, my brother, his family etc..... I think one step at a time...!!! I think this is why there is such a wait is so you have time to fully take everything in..... but I know we're all different anyway... hope this helps xx I was in total shock for about 8 months after we found out Dad was positive.... and I still look over the last 4 years as a bit of a nightmare really.!!!x Anyway, hope this helps xx
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Old 13-02-13, 08:15 PM   #5
Cupcake
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Join Date: Mar 2011
Location: East Anglia
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Default Re: How long does the test and counselling take?

Hi and welcome to the board.

I am here as my hubby was diagnosed 3 years ago after having symptoms.

My advice is take your time, once you know you can't change things. You could be negative and I hope you are, but once you know you are positive that clock starts ticking, how long for?

Believe me when u get that news and it is positive, it felt like we had just driven into a wall. In my heart I thought I was prepared for the worse, but how wrong I was. We had been to counselling 12 years prior, when my father in law was diagnosed, and through those sessions we decided, we already had our sons, there was no advantage to finding out and living with the time bomb ticking. Hubby started to show signs and had been ill, and because it was affecting g his work, we went back for test, it was quick due to previous counselling and circumstances. Even so, neither of us dealt with the result and hubby was so distraught had a breakdown and ended up in hospital for 4 months. He was very depressed as he was convinced he had let all of his family down and was worried about being a burden. Prior to his diagnosis he was a career man and nothing ever phased him, I would have never thought he would have been like he was.

I don't think it is something you can rush into, they must do the counselling because of the impact on families and honestly it is great, if I could turn the clock back to our life before HD moved in with us I would.

Take care xxxxxxxx
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Old 26-02-13, 12:50 AM   #6
bowesy67
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Default Re: How long does the test and counselling take?

I believe it takes 3 months of counselling plus the time it takes to process the blood results. However this info is taken from when my dad was tested nearly years ago.
I understand the reasons for counselling, however, to drag it out so long has been one of the reasons I have avoided testing. Short and sharp for me would be easier than dragging it all out.

I did actually go to my GP many many years ago who referred me to the geneology unit in Leeds, but I chickened out - had there have been something which was shorter a process I may have gone ahead....to this day I'm still left wondering and watching and waiting ...
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