Boyfriend diagnosed with HD, CAG 43- Advice needed :(

Hi, just thought I’d reach out to you all on here as I am struggling to cope and can’t really talk to anyone who understands the situation- would really love some advice from you as my heart is broken right now for my boyfriend who has just tested positive for HD with a CAG count of 43….

Im 27 and been with my boyfriend (30) for just over 2 years now, he has only just found out he has the gene and he is understandably really struggling to digest the shocking information but wanting us to be strong together and remain together as a serious couple. I have only 2 weeks until I have to make a decision to move in with him for a years rental contract on a house.

I feel horrible and incredible guilt as I am having feelings that I may not be able to cope emotionally if I do stay with him and make this commitment of the move. I love him so very much and it has torn us both apart finding out he has the gene. I know he is absolutely heartbroken as well because he has so many dreams for us and feels like before the test he could of given me the world and now he thinks he can’t.

I’ve always wanted a family and to grow old with him (that’s the fairytale I realise!) and now I am struggling to process the realisation that my dream cannot be reality without further heartbreak down the line for kids (if IVF worked and we could afford it) and myself once his disease starts to take hold . I feel like i am being selfish to feel like this and that anyone I talk to about it reacts that I must not love him enough to have these feelings which is so so far from the truth but I honestly feel that any happiness we have I will always have it in my mind that it is only temporary happiness and that I will be eventually left alone, heartbroken and with more stress than I can handle if I stay with him. The idea of seeing him deteriorate haunts me because I love and care about him so much.

I have educated myself thoroughly on the disease and I try my best to stay positive but I feel an incredulous sense of inner turmoil that I can’t shake or tame. He is an amazing person and I just refuse to believe that life can be this unfair.

His mum died of the disease just before I met him and we have had our fair share of ups and downs before the test due to his emotional issues and apathy off the back of that which I try to be understanding of but sometimes we would have enormous fights about his inability to be there for me or care about any problems I may have so it has always affected our relationship even before the result. I put it all down to the enormous strain of the disease and being able to cope and since he found out the result he has been nothing short of perfect and opened up to me more than he ever has before on an emotional level because he is petrified of losing me.

Is it selfish of me to be wondering if I can endure a future together? Online I see that the expected age of onset is 42-45 for this CAG count….all i can think is that I will only be 39/40 years of age when it all kicks in and that makes me incredibly scared and sad and shatters my dream of us having a family together.

I love him so much and I feel at this point either option of staying or leaving will kill me, I also worry about people judging me if I do leave him as I don’t want to be seen as weak, uncaring or selfish I feel utterly devastated at the moment and I wonder if I can cope with this feeling as an ongoing thing in my life to deal with. I don’t know if I will ever be able to manage this piece of news with a clear head and part of me believes there is more than one person out there for us all….any advice would be much appreciated as I’m totally lost on what to do and have this added pressure of us planning to move in together so soon

Thanks to anyone who has words of wisdom on this <3

Hello RoxyT
My wife has HD. She was diagnosed about 10 years ago and is now symtomatic. we have a son of 15. You ask interesting and difficult to answer questions. From my experience I believe that
I still would have married her even if I had known. It is difficult often, and for the first 10 years of marriage I used to blame myself for her emotions because I thought that I was the cause.
We found a support group which helps a lot. It was explained that the mental symtoms often show a lot sooner thatn the physical. I would say that one advantage in your case is that
you are aware of the diagnosis. We only became aware because my mom-in-law was diagnosed after obvious visual signs were seen and questions were asked by friends and family. This
led to the diagnosis and then to my wife having the predictive test. My suggestion is to see if you could attend a support group and discuss further with members in your group. Does your partner
know exactly how you feel? If not perhaps that discussion should be had with him. In our group the group leader is engaged and she has tested positive although she is not symptomatic yet.
I don't think you should feel guilty nor make a descision driven by guilt. We had our son before we knew. You can still have a good life together but the issue of having a family is significant. Would you consider adoption? We were involved in foster care for a long time until it became to difficult for us due to the HD.
I hope some of this helps.
Regards Russell

Hi, I advise to really think about it. I’m 16 years old my mom has HD. I see her degrading every single day. I see my dad suffering and depressed trying to be a single father. And the. U have to ask ur partner if they are ok going through HD and having a kid growing up watching their father like that. And even if you adopt so he doesn’t pass down the gene the child is going to have a hard time coping with it.