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Forum Magazin Donează

Partners: how are you dealing with knowing your parther is diagnosed with HD?

Young adults

Hi there,
I was wondering if there are any partners around here, as I would like to share experiences. Let me start by sharing some of my own experiences. A few months ago my boyfriend was tested positive for HD. We're both 28 years old and have been together for 8 years now. The past few months have been difficult for both of us, but we are dealing with the news in quite different ways. My boyfriend is a person who always thinks positive and he is able not to think of HD much. I am a person who tends to worry about everything (something I always have done) and dealing with the news has been difficult. I feel anxious about our future and it feels helpless not to be able to do anything about the diagnose. We end up in feeling guilty for each other: I feel guilty for worrying so much and my boyfriend feels guilty for not worrying at all.
How are you coping with knowing your partner is diagnosed with HD? Are there differences between you and your partner in dealing with the news? And for those who have HD themselves: how is your partner dealing with it? Is it affecting your relationship? I hope you would like to share your experiences.
Thank you.

My partner is at risk of HD (untested), we have been together for 8 years and are now trying to have children. He is the love of my life, but we are having real problems over our different ways of dealing with HD. I want to take steps to make sure that HD is not in our children's future. He feels that this is would be like giving in to HD and that in any case he may not have the gene. I can't live like that. It's difficult for me because in one way he 'owns' HD as it is him that's affected. But since we are trying to build a family together surely I should have a say too?

Young adults

My boyfriend is at risk too. We have been together for 2,5 years now and we want a baby together (I already have 2 kids). This is the reason my bf took the test. We'll have the testresult on september 4th.

He is still pretty calm about it, I worry a lot. About him changing and about a feature apart from him.

If he is tested positive I have no idea how to deal with that. All I know is that we won't have a baby the normal way. I don't want my kid to be in the same position as my bf is now.

Happiness is easy.
Young adults

Hi (Girls;),

It's great you wanted to share your experiences and feelings about being in a relationship with somebody at risk or tested positive for HD. My experience is a bit different because I have always known (since me and my partner were 21 and were just friends) that my partner tested positive aged 19. So when we 'felt more' for each other and wanted to be in a relationship together, we didn't have to discuss all these most important issues as I had known about his test result before and I could say I know HD well enough too. Obviously it wasn't easy to deal with it at the beginning - everybody imagines their life together hoping to live happily ever after and it may not happen. But when time flies, it's muuuuuch easier to accept it. We want to live our life happily, together, use every day as much as possible :) We're getting married next year and want to have children (free of HD) and live our life fully. What I hope is possible :-)

Firstly it is very important to decide if you want your kids to grow up in a family affected by HD. Then it is very important to make decision about having children together (if you want to have children at risk or free of HD). You both will be parents. This section may be helpful: There are many options available. It's much easier when you both have the same view on it and want to support each other.

Things happen for a reason
Young adults Sprijin Forum

Hey Everyone,

Thank you for sharing! It is great to see that the website is useful for the partners and carers.

Relationships can be tough and to add HD on top can sometimes make things even more difficult because it introduces new concerns and variables. Hopeful, it sounds like you feel somewhat helpless because your partner is not ready to find out his own status. I think it is important that you know that you do have a choice and options to ensure that the disease stops with this generation (if your partner does in fact have the gene). The links given by Marianne are great informational resources that you might be able to bring up with your partner.

Hopefully everything goes well. Thank you for sharing.