Dating a man with Huntington's - difficult situation

[Lizzie523]

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

Genetic screening is the correct term but thanks

What a dilemma. Is your biggest fear of having children who may inherit the gene? If so you can mitigate against that. Or is it having children who may lose their father early in life?

I had no idea about this awful disease until I read that article in The Guardian yesterday.

What a difficult decision to have to make OP. I genuinely don’t know what I’d do in your position. You have my sympathies

That is really difficult OP. You don't have to decide anything just now, and I agree with pp you need more information.

I knew a woman whose parent died of HD and she was terrified that she had it and had passed it to her kids. She'd not had the genetic testing at the time I knew her and was really too scared to do it. It's a frightening disease and no one could blame you for choosing not to pursue a relationship with this man. But I understand how gutting that is, when you like him so much, and it's literally the only reason you might want to end things. I'm sorry, OP. I do think more time and more information and conversation might help.

I wouldn’t personally. Life’s tough enough without walking into situations like that

My FIL has been diagnosed with HD last year, although he had symptoms for probably 8-10 years. I did lots of research on HD together with my DH and we finally decided to get him tested. We are currently awaiting results.

Couple of points:

As previous posters mentioned - PGD is available on NHS. I believe you have 3 free procedures, and, if successful, children will be definitely HD free. I know it is not ideal, but it's also wonderful how medicine can help those days.

If your partner did get tested - then (as long as it was on NHS) he got genetic counselling. NHS insist on having at least 6 sessions before making decision. Genetic counsellors are absolutely amazing, you can make additional sessions if needed, as a couple or separately, our counsellor even offered to talk to our GP (HD is so rare and lots of GPs will not know much about it).
Just an idea - but maybe you can ask your partner for his counsellor details ? I am sure they will be more than happy to talk to you and answer all your questions.

If you go to HD forum - there is lots of local advisers. I've never used it, but it is available.

CAG repeats - our counsellor also mentioned that if my DH decides to get tested, they will have more information about his CAG repeats and can predict to some extent how the disease will affect him

This is not only about children, as I mentioned PGD gives you a really good chance to have healthy children. HD cannot skip generations, so your grandchildren would be ok as well :)
But - this disease will affect stuff like mortgage, life insurance, even driving licence at later stages - so you should consider that as well

Hope that helps!

Also - I love my husband and (such a cliche !!) he is really my soul mate and even with his potential HD I know he is definitely "the one":)

I have been faced with Huntington's for the best part of 15 years. My DF had the disease, my 2 Uncles & Now my 2 Brothers.

It's a cruel illness & utterly heartbreaking watching your loved ones go through such a horrible disease.

I struggled the most with the personality changes. My DF went from a happy go lucky man, to one with alcohol abuse & anger and hatred. It wasn't his fault at all. The abuse was because he thought why bloody not he couldn't cope. The personality changes are part of the illness. That aside watching them become clumsy and the constant involuntary movements was just heartbreaking! It's awful. He passed away 4 years ago, not from Huntington's but from Cancer. I've been through the process of being tested & I thank my lucky stars I haven't got the gene. On the other hand I feel so guilty because my brothers were tested positive a few years ago but thankfully not showing any symptoms yet. They are both in happy marriages with children. A person with Huntington's is still a person & they truly deserve to be loved all the same. My DF symptoms didn't start until early 40's and he and my mother were happily married, but my mum did become his carer whilst holding down a job. They became housemates rather then a couple. My mum didn't find it easy at times but she loved him and she did the best by him. I'm sorry you have found yourself in this situation. My dad always remained my dad we still had great conversations and a laugh even in amongst Huntington's, they are still people. I wish you all the best 💐

@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 bit of a difference in something may or may not happen vs going into something knowing it definitely will happen.

I’ve met 4people with Huntingdons in the family , and my own family. It’s not that rare.

God OP it's really difficult, feel so sorry for you.
You've only been dating 1.5 months and are now in the honeymoon stage so it's difficult for you to imagine walking away. But trust me it will be easiest now, and not several months down the line.

I was in a similar position - dating someone who when I'd met him had a life-changing injury meaning I'd need to carry things.
He ended it (for other reasons, one being we lived too far apart).
On hindsight I would probably have started resenting planning my life around him. But I'd never loved anybody else quite like him and probably never will. Because we were together a short time I have an idealised version of our love but in the long term it wouldn't have worked. I'm actually grateful that he broke it off

My DH has a 50% chance of having it. We found out a few weeks before I was due to give birth to our second dc. He has chosen not to get tested, we don't want to know, we'd rather be happy now and cross that bridge if it comes to it. We just choose to pretend it doesn't exist and live in blissful ignorance. I don't know whether that's the right thing to do or not but it works for us.

I would say enjoy what you have now but don't make any plans for a future with this guy. I know that sounds harsh but that's my honest opinion. I love my DH so much and we have a family together now, I wouldn't bail on him. But every time he forgets something my heart sinks and I just think "is this it? Is this the start? ". It breaks my heart to know that the wonderful life that we have planned together has a 50% chance of being cut short. And I'm scared at the thought of being his carer, I don't know if I'm strong enough to do it and I don't want our relationship to be flipped on its head like that. And don't even get me started on the possibility that it could have been passed down to our dc's, I don't think I need to explain how I feel about that.

And this is how I feel with a 50% chance of my DH having it, the guy you're dating has actually been diagnosed so that's so much harder. The horrendous course that this disease takes is inevitable for him. I would honestly just keep things casual and fun if I were you.

This is so hard for you. Has he expressed views on entering a relationship with you? I imagine he feels very vulnerable?

It’s a different situation but my mum has a form of dementia that affects processing (she still knows who we are). My dad has no life, I’m too selfish (but at least honest).

This is an astonishing situation. A very astonishing situation of knowing two people with it, and leading to a highly specific moral dilemma. It’s almost like a Jodie Picoult novel, or a feature story.

Shelovesamystery, personality changes are the first thing, not forgetfulness.

@NapoleonOzmolysis

www.theguardian.com/lifeandstyle/2021/oct/16/living-with-huntingtons-disease-for-our-family-the-end-of-days-is-always-close-at-hand

Another insight.

I read this article yesterday and was really struck by the author’s assertions that the Huntingdon’s had affected her empathy and “likeability” for year before her other symptoms. It was very sad (but brilliantly written and a complete eye-opener)

I’m staggered by adults who may have the gene not getting tested, when they have their own children! It must be so frightening but surely an obvious thing to do?

OP I wish you all the best for what is a very difficult decision/set of decisions

My dad died of Huntington's in August. My mum resisted putting him into a home for as long as she could, but frankly caring for him was killing her.

It's a brutal disease, with only one ending. It's slow and unrelenting and utterly soul-destroying for the family. My dad was nothing human in the months leading up to his death.

Please, think very, very carefully about this relationship. If you fall in love with this man, there's a world of hurt in store for you. I know that sounds dramatic and defeatist, but it's the reality of loving someone with Huntington's.

@ArseInTheCoOpWindow

Shelovesamystery, personality changes are the first thing, not forgetfulness.

I remember that when I read up about huntington's memory loss was listed as one of the first signs. Memory loss, changes in personality and poor coordination are the things I remember so I kind of look out for those. Like I said we like to try and pretend it doesn't affect us so I haven't really looked any more into it since and memory loss just sticks in my mind. DH is estranged from the parent that has it (hense the news coming out of the blue) so I have no first hand experience of the disease. I probably should have a proper look into it but tbh I just don't want to read it.

The first sign of my sister having it was violence. This started at 15 and got much worse as she got older. I was terrified of her.

She was sectioned at 45, in care at 48 and died at 52.

I’m staggered by adults who may have the gene not getting tested, when they have their own children! It must be so frightening but surely an obvious thing to do?

Because what do you do if its too late to do anything about the children situation? What could knowing for sure change? Getting tested could mean finding out that my DH doesn't have it and it would lift this massive weight from our shoulders and be unbelievably amazing. Or it could mean finding out he has it and our lives crumbling around us. We'd rather have hopeful uncertainty. DH's sibling got tested and discovered that they do have it, their life literally did come crumbling down. Our dc's are still very young so I can't say what he will do in the future but right now we'd honestly just rather not know.

This is my life. I married a man at risk, I have one child at risk and one through IVF PGD. I can honestly say it has broken me and I’m strong.

I’m staggered by adults who may have the gene not getting tested, when they have their own children! It must be so frightening but surely an obvious thing to do?

As someone who grew up in a family affected by Huntingdons I’m staggered that you think like this.

Huntington’s is a terrible disease. It’s often better not to know.

You simply don’t understand unless you are in the situation.

I read that the vast majority of people who have a parent with Huntingdon’s choose not to have the genetic test that would reveal if they too will develop the disease. Based on that, I wondered if having children by pre-implantation genetic diagnosis might unwitting reveal if a parent had the Huntingdon’s gene.

Anyway, it turns out there is a way of carrying out PIGD that shouldn’t reveal this. This is done by concealing details of the IVF process from the couple (with their consent), e.g. the number of ovarian follicles seen on scans, the number of eggs collected, the number of embryos tested... I don’t know if the NHS offers this service, but it’s good to know that those who aren’t ready to find out their Huntingdon’s status can still have children who are free of the gene.

That’s not to say that any of this is easy. IVF is gruelling, and can fail at any stage. And the PIGD process adds an extra hurdle to get over.