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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 31-05-12, 06:18 PM   #11
emma1985
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Default Re: Is ignorance bliss?

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Originally Posted by hopehope View Post
Haha yes it seems to me too everyone is getting pregnant!

My husband is showing no signs or symptoms. His dad has HD so we know he is 50% at risk. Still waiting to hear if our application for funding for exclusion PGD has been approved. I was told it takes around 9 months (I think it depends how quickly your PCT works with the funding applications and how often their funding committee meetings take place). I have heard it taking much longer for some.

Is it your mother in law at risk? I was like you last year. My father in law was at risk but sadly deep down we knew he had some of the symptoms. He tested to take the uncertainty away for himself and so we could make plans. My husband is in his early thirties with no symtoms and the prospect of testing is not for him at the moment.

I sometimes sit and think he is such a stable rock in my life I don't think I could cope if he got this disease. That said, I am realistic and I know there is a chance. I personally swing in roundabouts over testing. At first I was against it but now I am more informed and believe testing or not testing has pros and cons so I am on side whatever he chooses. For now, it is not testing.

Can I ask, what risks did they tell you PGD carried?

Hope all is well. Let me know if you have any queries I can try help with having spent quite a lot of time looking into PGD.
Hi again, sorry it has been a while since I last replied. Hope you are okay. My mother in law is 50% at risk of HD but she is not displaying symptoms. The consultant did not go into too much detail about the risks but she did say that the success chance for PGD is 30%. She also mentioned congenital abnormalities and risk of miscarriage. It woulld be nice to know of any success involving PGD. We will have a lot of questions to ask during our next appointment. My partner and I have decided against testing. Have you any more news from your application? I'll keep you posted.
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Old 11-06-12, 09:15 PM   #12
Bormaley
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Default I appreciated

thats Great thanks
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Old 13-06-12, 03:30 PM   #13
angecornwall
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Default Re: Is ignorance bliss?

just reading the above posts, were the grandparents "late onset" when they developed symptoms..... maybe it's just me, and I beg to differ from some, but, just say, if, your mum in law does develop symptoms late onset, say then the likelihood is that if it is passed to your partner, he will develop it late onset, which could be decades off yet!! and then the baby.... how many decades away could that be????? I suppose my situation is that I am directly 50% At Risk and untested for various reasons as I had had my family and my daughter had had her family also before we knew it was in the family, my father died from the disease earlier this year when he was 72...!!!! That is a good age and well past alot of people !! It's just me trying to put years and years into perspective....... good luck with your choices xxx
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Old 14-06-12, 02:28 PM   #14
angecornwall
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Default Re: Is ignorance bliss?

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I understand what you say. Unfortunately, from what I have read there is no way of knowing when my husband will start IF he has the gene. Apparently it doesn't matter when the parent started and everyone is different i.e. from what I understand just because one parent started at x date doesn't mean the child will start at the same date. For me it is knowing I can do something about this that stops me just doing things naturally. It is of course different when you don't know HD is in the family. Every day I toss between PGD and CVS plus worry if my husband has this gene!!!
Yes i understand that you never know if and when it may start and like you say we didn't even know HD was in the family until well after I had had my children and my daughter had had her children. However, we had only just found out it was in the family and she was pregnant at the time. But also, they had another little one fairly soon after (when they did know it was in the family) because they found out her husband had cancer (he was 25 then, two and a half years ago) and they decided it was what they wanted.

But I also have a nephew (my brother's son) who is in the same position as your hubby, and he went with his wife to the genetics clinic. In the end they decided they did not want to go thru with any of the treatments and eventually had a little boy a few months ago, naturally.

And it's like you say in the title of your message "is ignorance bliss", my father was blissfully unaware he had this disease until 3 years before he died back in January, but he had shown symptoms for many many years and we put all of it down to him "just being Dad!" and we were devastated when we found out. So I'm just rambling on as well LOL but hope it helps I just try and put a bit of a different slant on it....... xx
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Old 14-06-12, 09:01 PM   #15
emma1985
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Default Re: Is ignorance bliss?

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Originally Posted by angecornwall View Post
Yes i understand that you never know if and when it may start and like you say we didn't even know HD was in the family until well after I had had my children and my daughter had had her children. However, we had only just found out it was in the family and she was pregnant at the time. But also, they had another little one fairly soon after (when they did know it was in the family) because they found out her husband had cancer (he was 25 then, two and a half years ago) and they decided it was what they wanted.

But I also have a nephew (my brother's son) who is in the same position as your hubby, and he went with his wife to the genetics clinic. In the end they decided they did not want to go thru with any of the treatments and eventually had a little boy a few months ago, naturally.

And it's like you say in the title of your message "is ignorance bliss", my father was blissfully unaware he had this disease until 3 years before he died back in January, but he had shown symptoms for many many years and we put all of it down to him "just being Dad!" and we were devastated when we found out. So I'm just rambling on as well LOL but hope it helps I just try and put a bit of a different slant on it....... xx
hi there,

Thank you for your posts, its nice to hear from other ppl who understand the whole testing and not testing situation.

aww a lovely little boy congratulations to your nephew and his partner :) i bet they are both over the moon with him :)

At the moment we are waiting for our next appointment with the consultant to discuss the referal for the PGD which is now in 2 weeks time i have got a pad full of questions to ask regards the risk the PGD carries lol (think she will need a strong coffee) hopfully after this appointment i will be able to lock some of my worries and questions into a box and give my tired brain a break to think of somthing more posative :) x
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Old 14-06-12, 09:16 PM   #16
Trisha
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Default Re: Is ignorance bliss?

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Originally Posted by emma1985 View Post
Hi everyone,

I am the partner of someone with a 25% risk of HD. We had our first appointment last Wednesday because we want to start trying for a baby. However, we do not want to know if my partner is carrying the gene or not as we feel it will cast a big shadow over the rest of our lives.

I would never try to coerce him into getting tested as I know it is not what he wants, but I also do not want to ignore the potential risks to our baby.

Is anyone else in this situation? Has anyone had experience of PGD, as we have been told we may be good candidates for this? I am really keen to hear from people who know what we are going through

Thanks, Emma x
Hi Emma, I have had two cycles of PGD at Guys in London. We applied to our local NHS trust (Trafford) in August 2010, at that time they didn't have a policy about funding PGD and it took a whole year for them to decide! We had two cycles approved on the NHS. I started my first cycle in August 2011 and I became pregnant but then sadly miscarried. However, this gave us some hope as we now know we can get pregnant. My second cycle began in April 2012 and this time my pregnancy test was negative. I am waiting to start a third cycle in October this year, which we will self fund. PGD is a real roller coaster, but I am staying optimistic! I am very happy to share my experience with you, if you want any further details- just ask.
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