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Old 18-08-16, 09:23 PM   #1
Amanda321
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Join Date: Aug 2016
Posts: 1
Default Boyfriend at risk of Huntingtons

Hi there,

Im 25 and have been with my boyfriend for around 3 years now and would love to start a family with him in the near future. Unfortunately his late father and aunt both had HD. His father recently passed away at the age of 66 and had been suffering from the disease for around 20 years, 10 of which were spent in a care home. I have seen the lack of quality of life that someone in the later stages of HD experiences and I am petrified that this will also happen to my boyfriend who is in two minds about being tested for this.
I really don't want to seem selfish but I don't know if I could cope with seeing someone I love so much having to go through the same as what I saw his father go through. We regularly talk about starting a family but I know this can't happen unless he is tested for HD first as we both do not want to potentially put a child at risk of being a carrier.
Can anyone offer any advice on what I can do? I don't want to pressure him into the genetic testing. I would hate to end the relationship due to this possible risk but I don't know if I can face the thoughts of a childless future.

Thanks x
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Old 19-08-16, 12:54 PM   #2
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 331
Default Re: Boyfriend at risk of Huntingtons

Quote:
Originally Posted by Amanda321 View Post
Hi there,

Im 25 and have been with my boyfriend for around 3 years now and would love to start a family with him in the near future. Unfortunately his late father and aunt both had HD. His father recently passed away at the age of 66 and had been suffering from the disease for around 20 years, 10 of which were spent in a care home. I have seen the lack of quality of life that someone in the later stages of HD experiences and I am petrified that this will also happen to my boyfriend who is in two minds about being tested for this.
I really don't want to seem selfish but I don't know if I could cope with seeing someone I love so much having to go through the same as what I saw his father go through. We regularly talk about starting a family but I know this can't happen unless he is tested for HD first as we both do not want to potentially put a child at risk of being a carrier.
Can anyone offer any advice on what I can do? I don't want to pressure him into the genetic testing. I would hate to end the relationship due to this possible risk but I don't know if I can face the thoughts of a childless future.

Thanks x
Hi Amanda it is a difficult decision and hard to look to a future with someone you love knowing the outcome only you can decided what is right for you .

I knew my husband had tested positive when we got married I love him and couldn't imagine life without him in sickness and in health and all that , it does still scare me i hate seeing him deteriorate but we have had some fab times and made lots of memories .
There are a few messages on the board regarding having children without passing on the gene and without having to test but which I know nothing about it directly as we had both children from prior marriages his daughter is at risk but mine are not .
I am no good and posting links but I'm sure someone will post them for you.

Good luck
Gabby
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Old 19-08-16, 02:03 PM   #3
Allan
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,098
Default Re: Boyfriend at risk of Huntingtons

.
Hi Amanda

This is an absolutely enormous mindful situation in which you find yourself at such a young age. Take your time together in working out what might be the best solution for you both.

Being absolutely open, honest and brutal, here [I think] are your choices:

1. walk away from him
2. stay with him
3. have children with him
4. stay but don’t have children with him

1. will cause total heartbreak for both of you.
2. means that you have to make several important decisions together.
3. hopefully means you will have successfully completed all the necessary items in 2 before reaching 3.
4. means that you will have successfully halted the possibility of passing on the mutant huntingtin gene to future generations.

There are many threads and messages here on the message board that can help you. If you use the "Search" facility you should be able to pin point many of your current dilemmas.

Testing, or at risk Being at risk and Testing … is totally dependent on your partner and his views on life, his life and those close to him. It’s a huge moral and personal dilemma

Genealogy, children, PGD CVS, IVF, PGD, etc are decisions for you both to make – with as much advice and information that you can gather on here and from the medical professionals in the various fields.

I have this 2014 paper among my HD collection:

Predictive testing for Huntington’s disease: an exploration of the partner's role in decision-making

Here's an extract:

Individuals living at-risk of developing HD have identified many factors that influence their decision to pursue or not pursue predictive testing. Common reasons in favour of testing include: to have certainty, to revise their children’s risks of developing HD, to inform future reproductive decisions, and to plan for the future with regard to marriage, career, and finances. Individuals are more inclined to pursue testing when beginning to plan for and make decisions about their future.

The reasons at-risk individuals provide for refraining from testing include: worry about being unable to cope with a positive result, the desire to hold out hope, the absence of a cure, and the fear of discrimination.

Recurring themes in the literature continue to reinforce that the decision is very personal and individualized.

The partners and spouses of individuals who are at-risk experience as much or even more psychological distress following a positive test result as the HD carriers themselves. Partners were observed to express higher levels of depression, anger, worry, and anxiety compared to the carriers.

One analysis examining participants’ coping strategies found that partners intuitively utilized more passive coping, such as withdrawal behaviours, which are generally correlated with higher levels of long-term distress. When asked why they never sought out more psychological support, partners frequently said they did not feel they had a right to grieve and/or burden the carrier.

There are fact sheets here: http://hda.org.uk/hda/factsheets

Best wishes


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Old 21-08-16, 10:53 PM   #4
wanda the mermaid
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Join Date: Jul 2016
Posts: 42
Default Re: Boyfriend at risk of Huntingtons

Amanda321
Please just take each day at a time.
Somebody getting diagnosed cannot be rushed as it is such serious disease to find out whether or not you have it.
A lot depends on how soon you you bf told you about it. You have to walk a mile in someones shoes who is at risk to know how they feel.

I know couples who have decided not to have children because they love their partner so much.
You do need to talk to each other about seriously.
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