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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 03-10-14, 07:10 PM   #1
Astra
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Join Date: Oct 2014
Posts: 19
Default Result

Hi everyone, this is my first post but I've been a lurker on this forum for some time. Firstly I'd like to say thanks to all who post here, even though i have never posted before your knowledge and goodwill have been a great support to me. I'm sure there are many other lurkers like me who get the same result.

HD is in my husbands family, we found out over a decade ago he was at risk, at this stage we had our children. We decided at the time not to test, my husband felt he wouldn't be able to cope with a positive result, however we decided we would revisit this when the children were older if he was still symptom free, in order to give them more clarity on their chances of risk.

Anyway earlier this year we started the process, it was harrowing. As required we fully prepared ourselves for a positive result. Yesterday we went to get the result, at that stage my best hope was that my husband was in the lower grey area. It was a huge happy shock to find out he's negative, no risk of having or passing the gene. Like everyone who gets a negative result there is a huge feeling of joy and relief but it's very much tinged with sadness and guilt for our other family members living with the illness and at risk. Due to his family and extended family having large numbers we have witnessed a lot of illness and death due to this disease.
We keep bursting into tears, they are tears of joy, I think after 10 years of living with the risk it's going to take some while to accept this risk is now gone. To be honest we have even asked each other if the test could be wrong!!

The reason I posted now for the first time now is just to share that there are negative results too, sometimes it feels as though the positive results far outweigh the negative and it can be over whelming.
One last note, to people at risk but symptom free don't symptom search, be aware but don't drive yourself mad. My husband can be quiet moody, something he freely admits, he twitches at night, so do I all the time but because he was at risk every twitch seemed like a symptom.

Anyway I wish each of you all the best, I will continue reading as I've became interested in the lives of regular posters and how things are going and am always rooting for you. More importantly I will be praying for a cure and get involved in fund raising for this cause.
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Old 03-10-14, 10:29 PM   #2
banda
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Join Date: Apr 2014
Location: Consett, County Durham
Posts: 480
Default Re: Result

Hi...so pleased for you and your family....what a relief. The mb will be quiet as people are attending the agm. We are not quite so lucky as hubby was diagnosed this year but it is good to hear news of those who are hd free...enjoy!
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Old 04-10-14, 08:25 AM   #3
Scooby
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Join Date: Feb 2007
Location: Vale of Evesham
Posts: 494
Default Re: Result

Thank you. Its always good to hear positive messages - gives us all some hope.



Sue xxx
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Old 04-10-14, 09:11 AM   #4
Catrina
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Join Date: Aug 2014
Location: North East
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Default Re: Result

[QUOTE=Scooby;56024]Thank you. Its always good to hear positive messages - gives us all some hope.

That is good news. Have a fantastic weekend! It will take a while for the news to sink in and for you to accept it.

10 years on from my own negative result I still do not quite believe it. Like you, I have two children and when times get really hard I look at them and hold on to the thought that they do not have HD.

However, as you say the awful feeling of guilt never quite goes away. And being the one HD free person in the family means that you can end up the last one able to care for every one else, so you can never really just walk away and forget about it.

The helpful posts on this website about other people's experiences really do matter!

Catrina.
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Old 04-10-14, 01:53 PM   #5
Astra
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Join Date: Oct 2014
Posts: 19
Default Re: Result

Thanks for your lovely replies, it still hadn't sank in but I suspect no matter the result that's always the way in predictive testing.

I hope the agm goes well for all attending, I'm in Ireland so hadn't realised it was on.

It is nice to know we will be able to offer more support to the family, I think because we were at risk and were as convinced as we could be that it would be positive we held ourselves back a little as a means of self protection.
The guilt won't go away but knowing that we can shoulder the burden is a positive feeling.
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Old 06-10-14, 05:22 AM   #6
Cupcake
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Join Date: Mar 2011
Location: East Anglia
Posts: 1,490
Default Re: Result

Wonderful news for you and your family, it is always good to hear, when the gene has come to the end of the line, something every one of us hopes for.

Have been to the AGM, fantastic weekend, there are some incredible inspirational people in our extended HD family, it was a very informative, touching weekend. I had the good fortune to meet for the first time some of the regulars on here, plus loads of lovely people.

Take care xxxxxxxx
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Old 06-10-14, 09:56 AM   #7
toosh
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Join Date: Jun 2011
Location: North East
Posts: 570
Default Re: Result

Quote:
Originally Posted by Astra View Post
Hi everyone, this is my first post but I've been a lurker on this forum for some time. Firstly I'd like to say thanks to all who post here, even though i have never posted before your knowledge and goodwill have been a great support to me. I'm sure there are many other lurkers like me who get the same result.

HD is in my husbands family, we found out over a decade ago he was at risk, at this stage we had our children. We decided at the time not to test, my husband felt he wouldn't be able to cope with a positive result, however we decided we would revisit this when the children were older if he was still symptom free, in order to give them more clarity on their chances of risk.

Anyway earlier this year we started the process, it was harrowing. As required we fully prepared ourselves for a positive result. Yesterday we went to get the result, at that stage my best hope was that my husband was in the lower grey area. It was a huge happy shock to find out he's negative, no risk of having or passing the gene. Like everyone who gets a negative result there is a huge feeling of joy and relief but it's very much tinged with sadness and guilt for our other family members living with the illness and at risk. Due to his family and extended family having large numbers we have witnessed a lot of illness and death due to this disease.
We keep bursting into tears, they are tears of joy, I think after 10 years of living with the risk it's going to take some while to accept this risk is now gone. To be honest we have even asked each other if the test could be wrong!!

The reason I posted now for the first time now is just to share that there are negative results too, sometimes it feels as though the positive results far outweigh the negative and it can be over whelming.
One last note, to people at risk but symptom free don't symptom search, be aware but don't drive yourself mad. My husband can be quiet moody, something he freely admits, he twitches at night, so do I all the time but because he was at risk every twitch seemed like a symptom.

Anyway I wish each of you all the best, I will continue reading as I've became interested in the lives of regular posters and how things are going and am always rooting for you. More importantly I will be praying for a cure and get involved in fund raising for this cause.
Hi Astra
Thanks for sharing your experience. It is always good to know that there is hope in families that the gene is not always passed on. My husband has two brothers who don't have the gene. That is difficult for him being the unlucky one out of the 3 of them. Like I have said in the past HD has played some positivity in our lives. Knowing he was at risk has spurred us on to do the things we wanted to do in life and that was mostly travelling and seeing as much of everything that money and time allowed. If HD wasn't lurking in the background would we have pushed ourselves to do the things we have done and have the life experiences and the memories? probably not!!!
Toosh

xxxxxxxxx
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Old 10-10-14, 10:16 AM   #8
Astra
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Join Date: Oct 2014
Posts: 19
Default Re: Result

Thanks again for the lovely replies. I agree Jacqueline this is probably the only time in our lives when we hoped for a negative result, it was hard to get our heads around that term when we first heard it.
I'm delighted to hear the AGM went well, I've seen updates on facebook and I was pleasantly surprised to see how many professionals were there giving talks.

Toosh, I know what you mean because of our fear of HD been in our kids futures we decided to give them and ourselves as many holidays as we could, if it hadn't been for HD we would have been saying " next year" and doing stuff around the house and saving more but we grabbed every opportunity we could and went. I'm so happy we did as time has flown, kids are older and the memories are made before it was too late and they leave home for college.
I think everyone would do well to see that anything could happen at any time and it's important to live life to the full, and appreciate each other. I would have missed that lesson if it hadn't been for HD.

Wishing you all the best, chat soon.
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