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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:
Knitwit101 · 17/10/2021 18:43

You and your friend are in a relationship with the same guy? His health is the least of your worries

AnyFucker · 17/10/2021 18:45

I don’t really understand. Huntington’s Disease is rare and yet you know 2 people with it and are in a sexual relationship with both of them ?

mumsiedarlingrevolta · 17/10/2021 18:45

yeah I don't follow either-

you and your 38 year old friend both in relationship with this guy?

please would you clarify

Andromache77 · 17/10/2021 18:46

Regardless of children, if the relationship lasts you would eventually become his carer. As far as I understand, if he has been diagnosed it's not a question of if but when he will get ill. It's a terrible disease with no treatment, which is not to say that there may be one by the time he starts to develop symptoms. It's very sad and nobody's fault really, but I wouldn't go there.

ArseInTheCoOpWindow · 17/10/2021 18:47

Whose your friend in a relationship with?

Huntingdons is in my family. It is a cruel disease. Had your bf had genetic testing?

Original poster
Lizzie523 · 17/10/2021 18:48

agh sorry. To clarify:

2 years ago, my friend, J, was diagnosed with it. I've known him for years. My other friend S is now dating him. She is a close friend. We were all in the same circle.

And yes unbelievably @AnyFucker now the guy I am dating also has it. His parent died from it a few years ago in his 50s. He was shocked that I knew about it at all.

OP posts:
Original poster
Lizzie523 · 17/10/2021 18:50

@Andromache77 it is early days at the moment. We are still in dating stage, not relationship. I'm treating getting to know him as I would anyone else.

But I've been thinking about it more as time goes on. I'm having such a nice time that the thought of breaking it off now over this alone feels awful to me. And yet I know I need to consider it.

OP posts:
bookish83 · 17/10/2021 18:50

Personally I would struggle. I have worked with the condition before and found it upsetting. Not sure what I would do x

glitterelf · 17/10/2021 18:52

I used to work with people with Huntington's it is one of the most heartbreaking illnesses. To witness generations watching loved ones transform and lose independence knowing that was what they were faced with was hard. Other posters are right you will face becoming a carer and potentially childless should you continue this relationship. Have either of you talked about the future?

Zeev · 17/10/2021 18:53

Your children would have 50% chance of inheriting the condition. I personally could not handle that.

Original poster
Lizzie523 · 17/10/2021 18:57

No @glitterelf. We've only been dating a short time so not discussed that yet. He has talked about his fears for the future some.

I suppose the way I'm thinking about is I'm having such a happy & lovely time for the first time since before this awful pandemic, as is he (we both lived alone throughout) & I would hate to cut it short now when things are going well.

As I said, I'm on the fence about having children. It just feels like I have to make this decision right now and it feels abnormal and quite horrible to be honest. I feel quite upset about it.

OP posts:
OtterAndDog · 17/10/2021 18:59

Does his disease mean he can’t have kids? Or he still wants them?

Just because I guess my gut reaction is that he would be better suited to someone who wants children ASAP. If he has only 15 years of independence left then he may want to crack on with having kids as soon as he can. But if you’re unsure then might not work.

Nanny0gg · 17/10/2021 19:02

@OtterAndDog

Does his disease mean he can’t have kids? Or he still wants them?

Just because I guess my gut reaction is that he would be better suited to someone who wants children ASAP. If he has only 15 years of independence left then he may want to crack on with having kids as soon as he can. But if you’re unsure then might not work.

It's hereditary. There's a good chance he could pass it on.
Aria2015 · 17/10/2021 19:03

Children are still an option. I know a family that has this terrible disease and a couple of them have had children via IVF and they had tests done on the embryos to ensure that they didn't pass down the disease.

It's very, very difficult. On the one hand I think that this man deserves to live his life to fullest and enjoy all the joys that a loving relationship and possibly children can bring. You could have many happy months, that turn into years of things continue to grow. But there is no denying that it's a savage disease that is heartbreaking to watch and also has major implications for a family in terms of care, costs of care and losing a partner / parent earlier than most would wish.

I'm not sure what I would do in your shoes, but I tend to think with my heart over my head so I think I'd maybe see where things go for a bit if I liked them a lot...

OverweightPidgeon · 17/10/2021 19:03

Like a pp said , if you do end up in a relationship with him you need to be aware that you will be his carer and any children you have may be affected . It’s so sad for him .

MakkaPakkas · 17/10/2021 19:07

If you did stay with him and decided to have kids you can do pre-implantation genetic screening to ensure that it's not passed on (obviously you have to go through an IVF type process)

AutumnLeafy · 17/10/2021 19:08

I think its a personal choice about what you think you can cope with.

BrilloPaddy · 17/10/2021 19:09

Having cared for a very young person with it, I'd be extremely cautious.

It's a horrific disease.

And it's not just passing the gene on with children, it's about bringing a child into the world who won't have a father for much of their life.

GranolaHolmes · 17/10/2021 19:10

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?

SandrasAnnoyingFriend · 17/10/2021 19:11

You've said his parents died of it? Do you mean that both of them also had Huntington's?

OtterAndDog · 17/10/2021 19:12

Of course there is always the chance you could get together and then split one or two years down the line as you’re just naturally not compatible anyway.

Goawaymorningsickeness · 17/10/2021 19:14

@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?
There’s a big difference between life going pear shaped down the line with the person you love, and actually going into a relationship with someone who you know you WILL end up caring for. Personally I wouldn’t even entertain a relationship with a person in this situation as awful as that may sound.
Northernlurker · 17/10/2021 19:18

Nobody can guarantee you won't face this sort of hardship in a relationship but there's a difference between accepting what happens as events evolve and going in to a relationship knowing what will be involved.
Huntington's is brutal, inevitable and all encompassing. Your life will be as a carer eventually and, if you decide to get pregnant, you could end up explaining to your child why they will deteriorate and die early as well as why their father will. If you are really unlucky you could watch your partner, child and even grandchild suffer the same fate. I would walk away. Some paths are too hard.

Zeev · 17/10/2021 19:19

@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 is not the same, not at all.