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Original poster

DP has spoken to the Doctor about getting tested for Huntingdon's

35 replies

boyoboy · 09/05/2011 19:21

He has a 50/50 chance of being positive....we have 5 children and it is for their future benefit he is being tested..

I am glad but I am scared to death, not only do we have the prospect of DP sufering with this incurable disease but also if he is positive our children could also have it.

If he tests negative then all is ok...non of our children need ever worry as they will not have it...

I dont know how I will cope with a positive response and Im scared we are in for a rough time if it is.

We have only just recently discovered that DP's father and brother suffer with this disease (once we had our own children! Sad)

DP's mother is insisting that he doesnt get tested, I dont think she can face another of her children tesing positive....I have said to DP we owe it to our children to know, it will either completely clear their mind or it will prepare them and them allow them to make their own choices...

Anyone any experience of this...I feel a little bit out of control

OP posts:
bulby · 09/05/2011 21:43

Sorry it's not on the applied course it's on the 'standard' additional science course.

Original poster
boyoboy · 09/05/2011 21:46

bulby, thankyou for the headsup on that, DS is 12 and has been doing about variance and some genetics stuff to do with dominant genes etc, didnt even think this would be up for discussion...thankfully DS 12 has hie head in the clouds most of the time and would probably be oblivious..DD however (10) would be well aware and probably quite upset by this discussion....neither of them are aware that this could potentially affect them ofcourse - but a class discussion such as that could ofcourse tell them otherwise .....might just check that out with the science teacher

OP posts:
Original poster
boyoboy · 09/05/2011 21:53

guys, thankyou for all your lovely helpful comments tonight. I am suddenly very tired and worn by all the thinking and worrying. Please dont think I am being thougthless if I dont sign in to respond for a little bit, Im soooo busy with work too and I feel a little bit overwhelmed...

Badger, I would love to talk more with you if that would be ok?...not quite sure what I would like to talk about but you feel like a bit of a light in the tunnel iykwim.....

And everyone thankyou, you have all said the right things, lovely things and this is why mn is so special xx

OP posts:
nevergoogle · 09/05/2011 22:35

take it easy boyoboy. it is overwhelming and that is why you are right to seek support. and at your own pace is totally understandable too.

YeahThatsTheBadger · 09/05/2011 22:53

This reply has been deleted

Message withdrawn at poster's request.

BarryShitpeas · 10/05/2011 13:44

Hi, just adding my family's experiences.
My grandma had this, my father and aunt have it, one of their brothers has died from it, and the other two brothers haven't yet been tested.

I feel the weight of this disease around me all the time. My life is quite happy, but it's always there in the background.

I am 34 and have thought about getting tested. I have had counselling and while it was helpful, I prefer not knowing.

There are lots of reasons for this- I have 4 young dc and I would really and truly sink into a depression that would stop me from looking after them if I had a positive test result. I would like to start work after a career break, and if I have a positive diagnosis then I would have to declare this and no one would hire me. These are the two main reasons.

My father was a headteacher, but had to stop work at age 50 due to HD. I think he was retired on sick pay with stress or something, but it was really this.

It has been absolutely horrendous to see his decline.

I will write more later.

deoxyribonucleicacid · 10/05/2011 19:19

I've known since I was 9 that my grandmother had HD.
My mother is now symptomatic but in denial.
I'm also 33 and i've had counselling which at the time led me to the conclusion that I don't want tested. Actually for the reasons given by Barry. My mental health is fragile enough without hope being taken away too.
I don't know how I could keep going to work every day if I knew my future was so bleak.
The children will eventually ask why granny walks funny etc and i'll tell them.
for me to learn at 9 when my mum also found it, was easier than finding out sometime later in adulthood. It's a shame it's usually kept a secret. Which only makes families feel worse.

eve34 · 10/05/2011 20:38

I have to post and tell you about the work of the HDA. Please do get in touch. There will be an advisor in your area to help support you all who have a family history of HD.

The genetics teams will counsel and support you whilst who decide to test or not. You can make this decision and change your mind as many times as you want.

The HDA would be able to let you know about current research, be there to listen and give support for as long as you need. THe HDA are working hard to raise awareness about HD and need you to ensure the figures for this disease are as acurate as possible so please please get involved.

If you have any questions I can answer I am happy to (work for HDA) Do get in touch we are here to help.

eve34 · 25/05/2011 09:04

Boyoboy - just wondered how things were going? Hope you are ok.

Acekicker · 25/05/2011 09:45

Thinking of you boyoboy.

This article is a positive read about living with Huntington's if it might help anyone.

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