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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 11-01-16, 10:10 PM   #1
Ashyrose7
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Default Big decision

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
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Old 12-01-16, 04:58 PM   #2
shiraz
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Default Re: Big decision

Ashyrose
It's not really possible to "tell" you what I would do coz that feels like saying this is what I am telling you to do - we can but give our personal opinions and viewpoints and hope that something may make sense to you or be of help. Whatever I say, for instance, has to taken from a carers stance - I am not at risk of hd.

I just find it strange - stupid and ignorant in fact - that your counsellor thinks there is no rush...given you are 22 you are approaching the years when you might be thinking of starting a family - so to me there is every reason to want to know.

We all have little secrets and white lies - often done for the best of intentions. First and foremost you have to look after yourself. If you mum doesn't want to know, then just don't tell her - you are an adult now and throughout your life and things you keep private. So yeah - you've kind of hit the nail on the head yourself - I'd carry on for my "own peace of mind". The dilemma will arise more of course should you test positive and that is when you might find it hard to keep things a secret coz you will be devastated. And it is also of course why the counsellor is being so awkward - playing devils advocate to "toughen" you up I guess incase you do turn out to be positive.

Stick to your guns and do what you feel in your heart is right for YOU. x
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Old 12-01-16, 10:23 PM   #3
Dolphin
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Default Re: Big decision

Hi

There's also a middle ground where you can make sure you are not passing on the gene and still have children without knowing your own status

There's a whole section of the message board about it

It isn't very easy to know you are at risk but I would say on balance the little bit of hope that you may be negative is a lot easier to cope with than facing a positive test result. You need to make sure you have a very good support network around you. The counselling is good because it is the time to really think through things.

I went to one session thinking I absolutely needed to know and came out of it knowing I wasn't ready. I did test in the end. But my sister hasn't still. I wish you didn't have to face this dilemma and I wish you lots of courage whatever you decide to do.

Dolphin
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Old 13-01-16, 03:14 PM   #4
Ashyrose7
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Default Re: Big decision

I already have three children, they think I shouldn't rush because I won't start showing symptoms until I'm late 50's early 60's by which time my children will be 35/40

I think I really do need to know, for my own peace of mind if nothing else.

Thanks for the advice

Ashy x




Quote:
Originally Posted by shiraz View Post
Ashyrose
It's not really possible to "tell" you what I would do coz that feels like saying this is what I am telling you to do - we can but give our personal opinions and viewpoints and hope that something may make sense to you or be of help. Whatever I say, for instance, has to taken from a carers stance - I am not at risk of hd.

I just find it strange - stupid and ignorant in fact - that your counsellor thinks there is no rush...given you are 22 you are approaching the years when you might be thinking of starting a family - so to me there is every reason to want to know.

We all have little secrets and white lies - often done for the best of intentions. First and foremost you have to look after yourself. If you mum doesn't want to know, then just don't tell her - you are an adult now and throughout your life and things you keep private. So yeah - you've kind of hit the nail on the head yourself - I'd carry on for my "own peace of mind". The dilemma will arise more of course should you test positive and that is when you might find it hard to keep things a secret coz you will be devastated. And it is also of course why the counsellor is being so awkward - playing devils advocate to "toughen" you up I guess incase you do turn out to be positive.

Stick to your guns and do what you feel in your heart is right for YOU. x
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Old 13-01-16, 03:16 PM   #5
Ashyrose7
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Default Re: Big decision

Hello.
If I am found not to have HD does that mean my children will not be at risk either?

That's what's getting me through if I am honest with you, just thinking I could be negative and not have to worry about it for a few years

Thank you very much
x


Quote:
Originally Posted by Dolphin View Post
Hi

There's also a middle ground where you can make sure you are not passing on the gene and still have children without knowing your own status

There's a whole section of the message board about it

It isn't very easy to know you are at risk but I would say on balance the little bit of hope that you may be negative is a lot easier to cope with than facing a positive test result. You need to make sure you have a very good support network around you. The counselling is good because it is the time to really think through things.

I went to one session thinking I absolutely needed to know and came out of it knowing I wasn't ready. I did test in the end. But my sister hasn't still. I wish you didn't have to face this dilemma and I wish you lots of courage whatever you decide to do.

Dolphin
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Old 13-01-16, 05:13 PM   #6
shiraz
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Default Re: Big decision

AshyRose

You is spot on - if you are negative then you cannot pass it on. It doesn't skip a generation and reappear. If you are negative then so would your children be, which would be something indeed to about.
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Old 13-01-16, 10:11 PM   #7
Ashyrose7
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Default Re: Big decision

Thank you, that's great and a big weight off my mind.
I don't know why I didn't think to ask that to the counsellors.
xx

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Originally Posted by shiraz View Post
AshyRose

You is spot on - if you are negative then you cannot pass it on. It doesn't skip a generation and reappear. If you are negative then so would your children be, which would be something indeed to about.
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Old 14-01-16, 03:25 AM   #8
shiraz
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Default Re: Big decision

AshyRose
I'm showing my age again....I thought at 22 you would not probably have children yet, but I have obviously missed a post of yours which I have now seen and it says you already have three children.

What springs to mind is that, it's all the more reason the counsellors should want you to get tested, followed by hd normally starts to appear 45 onwards and....the thought that your kids would be 35/40 just means that by then they will themselves have had children and so the secrecy/lies/denial/continuation of hd goes on. Ignorance is not necessarily bliss. To me - again I am a carer and not at risk - it is all the more reason to get tested. If you are negative then your kids are fine and so are theirs, if you are positive then maybe somewhere along the line you can prevent hd from continuing to blight your family - IVF etc? They may even, like others decide it's best for them if they don't have any children. May sound harsh/blunt...but sooner or later....the situation/disease has to be faced and defeated head on......

If I have caused offence to anyone by my directness I apologise, tis not my intention. I am really aghast/shocked at the counsellor more than anything. Effectively he/she is saying keep quiet/forget about it/hide it from your kids and not looking to the future....blinkered....ignorant...perpetuating the situation and I don't understand it at all. - specially if, if you turn out to have hd they won't be there helping you whatsoever by and large.

I would deffo stick to my guns and get tested for you childrens'/grandchildren's sake. But that is just me....whatever you feel is right is the way to go....
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Old 14-01-16, 11:09 PM   #9
Ashyrose7
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Default Re: Big decision

No worries, I did have my children young, was a bit of a shock to the system but I wouldn't be without them now.

You are quite right, my children will probably have their own children by the time my HD symptoms start and I should protect them from that.

I am definitely going to stick to my guns and get tested. It's all down to the psychiatrist, who I will meet with next month, he decides if I'm ready enough to have the test.

I must admit I did get a bit ratty with the councellors last time I saw them because she just doesn't listen to me, she asks me the same questions over and over again, it does my head in.

The psychiatrist is a man though and I find men much easier to get along with so maybe it will go okay, who knows.
I will keep you updated.
Thanks for your support
Ashy xx



Quote:
Originally Posted by shiraz View Post
AshyRose
I'm showing my age again....I thought at 22 you would not probably have children yet, but I have obviously missed a post of yours which I have now seen and it says you already have three children.

What springs to mind is that, it's all the more reason the counsellors should want you to get tested, followed by hd normally starts to appear 45 onwards and....the thought that your kids would be 35/40 just means that by then they will themselves have had children and so the secrecy/lies/denial/continuation of hd goes on. Ignorance is not necessarily bliss. To me - again I am a carer and not at risk - it is all the more reason to get tested. If you are negative then your kids are fine and so are theirs, if you are positive then maybe somewhere along the line you can prevent hd from continuing to blight your family - IVF etc? They may even, like others decide it's best for them if they don't have any children. May sound harsh/blunt...but sooner or later....the situation/disease has to be faced and defeated head on......

If I have caused offence to anyone by my directness I apologise, tis not my intention. I am really aghast/shocked at the counsellor more than anything. Effectively he/she is saying keep quiet/forget about it/hide it from your kids and not looking to the future....blinkered....ignorant...perpetuating the situation and I don't understand it at all. - specially if, if you turn out to have hd they won't be there helping you whatsoever by and large.

I would deffo stick to my guns and get tested for you childrens'/grandchildren's sake. But that is just me....whatever you feel is right is the way to go....
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Old 15-01-16, 03:39 AM   #10
Anastasia
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Default Re: Big decision

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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