Huntingtons Disease

[windymila]

I'm going to try and keep this as vague as possible, as this affects my fiance and his family and I want to respect their privacy.

Basically, we've just had word that my fiance's grandparents sibling has been diagnosed with HD in their 80s. I don't know them at all but I know he was an alcoholic and a very troubled person for years. I suspect this has masked the symptoms somewhat from their relatives. Their sibling, my fiance's grandparent, is slightly younger and has no symptoms as far as I know, but is now going through the testing and counselling process.

As you probably guess I am terrified. A few days ago I was full of excitement for our upcoming wedding and thinking about future children and our life together and I feel like that has all come crashing down around us. Fiance is obviously the same but there's not much he can do until his grandparent finds out either way if they have HD or not. I am somewhat heartened by their age and seeming lack of symptoms, but know that this isn't a definite sign that they don't have it. I also feel like I shouldn't be feeling so stressed out and emotional and should instead be strong for my fiance and his family.

How long does the testing / counseling process take? This is in the UK.

Sorry if this makes no sense, probably a reflection of my brain right now.

Can your DP just get tested to see if he's carrying/suffering from the gene abnormality?

I think he will need to think about testing quite carefully. As it is a dominant gene you can only have it if your mum or dad has it, so it can't be passed on silently. He should probably discuss with his family, as if he was positive that means his mum/dad and grandparent will also get the disease, and they may not want to know. But obviously he may want to know before he has children - I just think the counselling will probably take longer in this situation as they will need to discuss with all the family.

It can only be passed on directly

My mum has HD. The counciling process takes around 4-6 months along with the test.

My DH has Huntington's. We have two children through PGD, so even if your fiancé does have HD there are really good options available to prevent it from being passed on.

HD is dominant so unlike other diseases if you have it you will at some point show symptoms. However, that doesn't necessarily mean his parents have it. There is a grey area regarding a persons CAG repeat where some do and some don't end up having the disease, between 27-39. Everyone has the Huntington's gene, if you have a repeat above 40 you will at some point develop HD. The HD buzz page is really helpful. Feel free to message me.

Have him tested privately if you can possibly afford it. The NHS - quite understandably - will want the grandparents, then parents to go through the tests and everything first.

When I went through the testing process, from start to finish it took about 9 months. It's a long old road.

It's an extremely frightening prospect. The best advice I can give with regards to supporting your fiance is just let him work through whatever he's feeling - if he's frightened, let him feel it and express it. I used to hate it when people told me to 'Come on, pull yourself together' - they weren't the ones going through it, I was sick to the back teeth of people telling me to not let it get me down.

DH just let me get it all out, he was the most patient, open soundboard I could've wished for. I wish you all the best

This is a very late response, but that you for all of your advice and well wishes. My fiance had to wait until his grandparent got the results from their genetic tests so it was a slightly worrying couple of months. Thankfully the test came back just before our wedding and the grandparent was given the all clear! Obviously very relieved for the entire family :)

HD in their 80s? That's quite unusual, onset is usually middle age. Are you sure it's definitely HD or could it be something else?

If your finances grandparent hasn't got it, then your fiance won't have it either. It doesn't skip generations either so try not to worry OP, easy to say I know but as mentioned before it can only be passed on directly xx

Op what skylo said. I have looked after people with Huntingdonshire disease and they have all been middle age and having very obvious symptoms with arms and legs sporadic movements etc. It does seem unusual in his 80s.