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Original poster

Dating a man with Huntington's - difficult situation

97 replies

Lizzie523 · 17/10/2021 18:38

I started dating a guy 1.5 months ago & he told me fairly early on about his diagnosis. We are both in our late 20s. He isn't showing symptoms yet & may not for some time - my friend also has it and just began displaying symptoms aged 38.

My friend is also in a relationship with this friend (we all met in the same circle) and she finds it quite hard. I certainly thought it spoke volumes about her dating him when it would affect her life.

Now I realise I've been enjoying seeing him so much, and we've slept together (wonderful!), and I kind of forgot about it.

I'm on the fence about children but want to leave myself open to that. I'm enjoying dating him & not even sure about how serious it will get. Do I need to rethink progressing things?

It's v sad when I stop and think about it Sad

OP posts:
GranolaHolmes · 17/10/2021 19:20

Perhaps you should be genetic screening all potential partners?

Original poster
Lizzie523 · 17/10/2021 19:21

@SandrasAnnoyingFriend his father had it, his mother is fine. She went on to have more children who are all fine.

@OtterAndDog yes that has crossed my mind. And because I am happy now, I will find that hard to give up. Very hard.

@Goawaymorningsickeness when I found out my friend S has knowingly entered into a relationship with J knowing about his illness I privately told a friend that I could never do that. I would never have imagined I'd actually meet a man I liked who had it because I understood it was rare.

OP posts:
ohfourfoxache · 17/10/2021 19:24

If kids were potentially on the table then you could consider applying for funding for PGD - it would involve IVF but at least you would be able to ensure that kids aren’t “affected”

Sorry, I know that sounds blasé Sad

Rainallnight · 17/10/2021 19:24

That Guardian article posted above is well worth a read. It’s heartbreaking

Bananarama21 · 17/10/2021 19:29

I couldn't do it personally watch someone deteriorate infront of my eyes who I loved. I couldn't run the risk of my children carrying such an awful disease.

Dancingbugbadge · 17/10/2021 19:30

Having worked with people with Huntington’s disease for many years I would think carefully. Having children is a tricky subject, as I’m sure you are aware it’s a 50.50 chance if your partner has HD and you need to be aware of that Juvenile HD is a exists. There is nothing wrong wrong perusing a relationship with someone with HD but I think you need to be aware of the challenges that such a relationship will bring. Have you googled all them symptoms and how people present as they develop the illness? If so and you are happy that’s fine. I wish you all the best. Don’t get me wrong people with HD still deserve love, their partners just need to make sure they are prepared for the challenges they will face especially when you at the beginning of a relationship.

Allllchange · 17/10/2021 19:30

Has he had the genetic testing? Does he know what percentages there are for developing it at each age? There is a lot of promising research going on into treatment for Huntingdons but obviously no guarantee they will definitely find anything to help. It is a horrible disease. Only you can make the decision whether to remain in the relationship and I don't envy you that decision.

Dancingbugbadge · 17/10/2021 19:31

And I apologise for all the typos!

Original poster
Lizzie523 · 17/10/2021 19:31

I always said I couldn't do it before I met him. We talked about when we first met and then got caught up in dating.

I genuinely more or less forgot about it until tonight when it suddenly hit me. And what do you say? I'm breaking up with because of this? That's brutal.

And I don't even want to break it off. So I would need to walk away from someone I have feelings for. The whole situation is awful.

OP posts:
Allllchange · 17/10/2021 19:32

When it comes to children you can have the embryos tested but it obviously means things are more complicated.

Dancingbugbadge · 17/10/2021 19:39

You don’t have to break up with him. If you are realistic for your future and happy to support him that’s amazing. For children their is embryo testing.

Dancingbugbadge · 17/10/2021 19:41

Do you have anyone in real life to talk this over with? It’s a huge decision to say you have only been dating 6 weeks?

IWantT0BreakFree · 17/10/2021 19:41

@GranolaHolmes

Those of you saying you wouldn't want to take on a partner where you could end up as their carer, do you have guarantees that this won't happen with the partners you have chosen? Did they promise really hard that this won't happen?
That's not remotely the same. You're talking about something that's a vague possibility for everyone vs the certain knowledge that your partner will require full time care and will die, probably very young.
Hayup · 17/10/2021 19:47

My lovely friend's husband has HD. It is such a cruel and devastating disease; she is heartbroken that she will not have a long and happy life with him, but focuses on being happy now - she is his carer as well as his wife and so the dynamic of their relationship has changed. Even so, they are happy and I am in awe of her strength as well as his.

His diagnosis came after 10 years of marriage so entirely different circumstances to you OP.

It's a difficult thing to consider and only you know how you feel Flowers

Kdubs1981 · 17/10/2021 19:49

@GranolaHolmes

Those of you saying you wouldn't want to take on a partner where you could end up as their carer, do you have guarantees that this won't happen with the partners you have chosen? Did they promise really hard that this won't happen?
It's slightly different when it is a guarantee
Summerfun54321 · 17/10/2021 19:50

Caring for a partner and looking after young children at the same time is absolutely brutal. I wouldn’t end it over this but I also wouldn’t be exclusive either.

cptartapp · 17/10/2021 19:51

Granola There's never any guarantees in life. But statistically you're almost certain to be a carer to someone with HD and almost certain not to be to someone without. I'd want to take action to put the odds in my favour.
With my logical, practical and most importantly long term head on, I wouldn't go there.

GranolaHolmes · 17/10/2021 19:54

Why not have a proper conversation with him to gather more information? One where you discuss the future and what is and isn't important to each of you.

If you need more background you could approach your local HD specialist advisor. Most areas have one. And I'm sure they'd be happy to have an informal chat.

There are more specialist forums with posters with lived experience not the advice you are getting here. I believe the Huntington disease association offer this too.

Just supposing, what if what he actually wants is not to get into a serious relationship? What if he wants to live as normal a life as he can until he can't but has no plans to become a burden to a partner and wants to have professional care when it's needed in a care environment. You could have an agreement of checking in each year to see if you want to continue with the relationship.

There's far too many what ifs at this stage in the relationship.

You don't have all of the information to make any decision yet.

A positive test result is no predictor of how the future will pan out. Yes ultimately if nothing else gets him first, then he will die with Huntington's. Maybe he will be alone, maybe he will have a partner, maybe he won't care either way by that stage. But life continues to happen and he still has to navigate the risk of strokes, cancers, bloody covid and accidents just like everyone else. The test result is not a crystal ball and not all experiences of HD are the same.

Mrstwiddle · 17/10/2021 19:56

I know people in this situation and they paid for ivf to ensure they wouldn’t pass it onto their children. I would also be concerned about the impact it will have on your life when he does start to show symptoms. You could be spending decades of your life as a full time carer, I would personally walk away before getting any more involved. I realize that may sound heartless.

Meloncurse · 17/10/2021 19:58

Those of you saying you wouldn't want to take on a partner where you could end up as their carer, do you have guarantees that this won't happen with the partners you have chosen

It's the personality changes that normally accompany Huntington's that I would struggle with, not the caring responsibilities alone.

CharleyMarley · 17/10/2021 19:59

@GranolaHolmes

Perhaps you should be genetic screening all potential partners?
...geneticALLY screening
ThirdElephant · 17/10/2021 19:59

You could have kids but you'd probably want to go down the route of IVF and pre-implantation genetic testing. Huntington's age of onset tends to decrease every generation, so you're not looking at much past 40 for onset, given that his parent died at 50 so presumably started showing symptoms a couple of years before that.

It's a toughie alright. Is it better to have loved and lost than never loved at all? It's not a choice I'd like to have to make.

gofg · 17/10/2021 20:01

You've only been dating him for 1.5 months so have no way of knowing how serious it's going to get. If you really like him then carry on dating him and just take each day at a time. He needs to have some form of normal life for as long as he can, so why don't you just enjoy the moment. As long as you go into this with a clear idea of what could happen, and it seems as though you do, I would keep on with the relationship for now and see how it goes, just be aware that there will be difficult decisions ahead.

Dozer · 17/10/2021 20:02

Far, far easier to stop dating him now than at any time after falling in love.

It’s not ‘brutal’ not to want to date him for this reason. people don’t date or stop dating others for all sorts of reasons. This is a good one.

CharleyMarley · 17/10/2021 20:02

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