Aibu? husband and genetic testing.

[Deemail]

My dh is at risk (50%) of inheriting a debilitating illness, if he is a gene carrier our dc will have the same risk. It is a terrible terrible illness which usually strikes between 30-45 but can be sooner or later, there is no preventative, cure or effective treatment.

We didn't find out that he was at risk until after we had children. Obviously when we did find out it was a huge shock. Dh felt he wasn't able for genetic testing to find out whether or not he has the gene mutation. I would have been keen to find out but understood that this wasn't something he was yet able for. We decided to wait a few years and agreed that at some point we would have to know for sure for the childrens sake, (if the illness had not already started).
It has now been a lot longer than the few years we said. The kids are teenagers and I feel we need to know for their sake. We mention the illness and family members having it and it been inherited, from time to time but they really do not understand the signifigance of it.

Aibu insisting dh has the test so we know where we stand and also where children stand. He says he wants to have it but has said that for years and has never done anything about it.
Im scared if I push him into it and it is a positive result he will blame me and also give up.. Im scared if he doesn't have it the dc will resent us in time to come for not been more honest about what lies in the future for their father and possibly themselves.

[SweepTheHalls]

The children will be taught about genetic inheritance of diseases in school when they do GCSE's, if they haven't been prepped for this by you they could find this very distressing, Huntingdon's is often one of the conditions that we discuss.......

[Beastofburden]

when your DC are adults, I personally feel that they need to be told very clearly what the risk of transmission is to their own DC. I think that ought to be before they get into any very serious relationship. You may find it better to have a genetic counsellor do it, with the latest data on treatment and prognosis, and follow up if they decide to be tested. If your DH is determined not to know, he also has to ask them not to tell him, if they have a positive diagnosis.

I guess he will work out for himself, that this could mean them going through a difficult time without his support.

[biscuitsandcheese]

I too have a 50/50 chance of huntingtons. I always said I'd be tested when I was 30, I'm 31 now and haven't started the testing process. Quite frankly it's because it's terrifying. My sister was tested at 28 with a positive and she says its a long time to know about it. She's 43 now and thankfully hasn't developed any symptoms yet. My other sister who's 36 hasn't been tested.

My eldest child is a teen and wants to be tested when he's 18 so I'm going to have to be tested soon.

I can completely understand why your husband doesn't want to know. You can't undo knowing if its bad.

I'm really hoping beyond hope that they find a cure soon. I know they're working on it.

[BrownSauceSandwich]

OP, I'm so sorry to hear of your situation... It must feel just awful. But I honestly believe that it is your husband!so right to NOT know for as long as he can, or as long as he chooses. If you hadn't had your children, then perhaps you'd want confirmation one way or the other, but at this stage no knowledge can make you change the situation. Furthermore, this is something your children will have to deal with, or not, AS ADULTS. I don't think you can rob them of the right decide whether or they want to know. You can talk to them about, have counselling as a family, but ultimately, I think you have to back off and leave it to them, when they're ready and old enough, to decide for themselves.

I don't think you are unreasonable. Life is cruel.

[zeno]

Hi Deemail. I'm glad that posting this is helping you feel less isolated.

It's interesting that you were surprised anyone else here knew about Huntington's. The secrecy and stigma within families and society is very strong, but you are certainly not alone, and there are so many people and families who have been faced with the choices you have now.

Should it come to pass, you will need all the support you can get as carer, partner, mother, so do make sure you are included in any counselling, or seek it independently. It's good that the teens at least are aware that it is in the family, meaning they can ask questions when they need to.

Sending you strength to face what comes.

[BrokenSunglasses]

You don't need to worry about your children being affected by the secrecy if you are honest about the position you are in now. Your DH doesn't have to have the test for you to be honest with your children and to hopefully prevent the problems that come with the secrecy.

That much of this is within your control, even if the huntingtons isn't.

[CockyFox]

My family have familial motor neurone disease.

It terrifies me, they don't know the gene that causes it yet but have told us there is a 50% chance of having the gene and that 80% of people who have it will get the disease between the ages of 50 and 80 but some earlier. It appears to have a very late onset as we weren't aware of it until the current generation of sufferers .

If there was a test that could tell me I would have it in a heartbeat, the uncertainty is so hard, especially looking at my mum, everytime she tells me she has fell over or I see her drop something I think 'is this the start?' I honestly hope I take after my dad's family and die young.

[forumdonkey]

My BIL and Sis have been through this discussion (they have 2 DS's) for MND. Again there is no prevention and no cure for MND. They decided that knowing would not change the outcome but a positive could have a devastating negative effect knowing.

Another consideration OP is knowing a positive result could also have consequences on getting insurance, loans / mortgages etc. Again affecting the quality of life during what could be many healthy years.

Sometimes ignorance is bliss.

[OneLittleToddleTerror]

Hi deemail, my family has a different motor neural disease which hits at around 50+. I went to genetic councelling and testing with the NHS. They always offer counselling first, and it's only after counselling they offer the testing.

The counsellor told me all the negatives on testing. Including insurance. She said currently no insurance company is allowed to discriminate you on a positive test. However, she did say no one knows the future and this could be changed. She also said that a positive test on me will have ramification on my mother's carrier status. (I'm not sure if it's like HD, but the one my maternal uncle has only affects male, but have female carriers). I only have a daughter so my decision is a lot easier than your DH. I've decided to test so I know whether I need to discuss this to DD when she's an adult and go for genetic counselling herself. It turned out that I'm not a carrier. My own brother has decided not to test.

It's not going to be a easy decision. I'm glad you decide to take the counselling first.

[OneLittleToddleTerror]

BTW, the one my uncle has has no cure and no prevention either.

[OneLittleToddleTerror]

And the counsellor also talked about the positives to testing. For example, male sufferers might change their decision to have children on a positive test. Also, female carriers would be able to do genetic testing on foetuses to decide whether to abort a carrier/sufferer.

[OneLittleToddleTerror]

And sorry to post again. But like others say, I think you don't need to push your DH to test. But you need to talk to your own DC when they turn child bearing age. They have a right to know and decide if they want counselling/testing, before they pass it onto another generation, or have genetic testing on the unborn foetuses.

I'm sure you are very worried about your DC. I know my own DM is. She's worried to death about my DB having the disease.

[Arnie123]

We have been in a similar position with our son who has a 50 50 chance of a genetic disorder (not Huntingtons). I saw the professor at the children's hospital and demanded a test only to be told no as "you do not want the result of the test you only want to be told your son does not have it". He said go away and enjoy having a son who is currently healthy. He said other families had had the test and became very angry and bitter at him when it came back positive. I genuinely think he is right on this and I think you are just seeking reassurance he is healthy. If you take the test and it comes back negative then great! If it comes back positive it has the potential to ruin your lives before you even see symptoms in your husband

[ProtegeMoi]

Thank you.

Reading that its a 'mild' version in your family and that those suffering from it have good quality of life than no I wouldn't be tested, if I was your husband that is anyway. Obviously the kids can choose themselves.

As I said my cousin died aged 24 his huntingtons started to affect him when he was just 14 years old. By his death he was in a wheelchair, bed bound, unable to talk, walk, feed himself, go the toilet etc. He had no quality of life for a good 5 years before his death. That is what I personally assosciate with huntingtons hence my comment that the children have the right to know (not if they have it or not as that's a personal decision but that they are at risk) so that they can made decisions about having children themselves.

My auntie watched all 4 of her children die from this disease one after another. No mother should have to bury a child, never mind all of them. I know that she wishes she knew about the huntingtons before marrying and having children.

I wish you good luck and hope that is your husband gets tested that its a good result.

[LessMissAbs]

Sorry but YABU. It can only be your DH's decision to make. The time for testing would have been before having children, if his family history had been known then. Lots of people don't want to get tested, I know one girl with a family history of Huntingtons who has decided not to be tested, to enjoy her life as it comes and to not have children.

Whether your children decide to get tested is another matter.

[Andro]

Irrespective of what your DH decides - and YANBU to suggest that he be tested - your DC need to know about the illness, the hereditary nature of the illness and the availability of a test to find out if they are affected (inconclusive must be hell though). Your children have a right to know they can find this information out before they have children of their own, be very honest with them.

[Deemail]

Hi everyone thanks for all the replies in will answer better when I get a chance in a little while.
Just to clarify if do not want to get the children tested that will be their decision when the time comes, I will not influence them either way.

Another reason I want dh to be tested is every single person bar one in his immediate and extended family have suffered a break down of their marriages and the person with hd has been left in a terrible position. I want to do all I can to make sure this does not happen to dh.
I have to do a pickup but I will come back and clarify in a while, thanks again.

[ginpig]

This is a very difficult situation indeed. I completely understand why you want your children to be tested, but as you know if any of them received a positive tests your husband would instantly receive a diagnosis.

I'm not a doctor, but I did used to be a scientist working in HD- if you wanted I could explain why some of your husbands relatives have been given an 'inconclusive result'. If you'd like to go through that then please PM me.

As others have said there is no substitute for genetic counseling- as your children are nearing an age where they could make the decision to get tested themselves, this is something your DH should do as well. Going to counseling is not a definite lead in to testing- it's designed to give you all the information you need to make an informed decision and allows you to explores various issues- some you may not even have thought of.

For what it's worth, I don't think YABU, but nor do I think your DH is BU- this is why having genetic counseling would be a good idea.

[cardamomginger]

I think your DH and DCs need to decide for themselves whether they want to know or not. If there is no cure or effective treatment, what purpose would the knowledge provide? I understand that if they all tested negative that would be a huge relief. But in the event that they test positive, how would that knowledge be useful to you? You already know enough to be on the lookout for signs and symptoms, and what those signs and symptoms are, so what will it add?

Even if your DH does have the mutation, the only way to find out for sure in respect of your DCs will be to have your DCs tested. So, even assuming that your DH does want to find out (and if he keeps putting it off, it may be that he really doesn't want to find out), that may not be the end of it.

I strongly feel that your DCs need to make the decision about testing for themselves. I'm not sure that as teenagers they have the emotional maturity to truly understand what obtaining this knowledge will mean and the impact it may have. They may decide that that is only when they come to think about having children themselves, and possibly as part of a joint decision with their spouses. I really don't think you can make that decision on their behalf. Another thing to consider is how would they, and you and DH, feel if one tests positive and one tests negative?

Please think carefully - you can't un-know something once it's out there.

I agree with other posters who have said that genetic counselling could be helpful, both on an individual basis for your DH and DCs, and together as a family.

It's so hard to manage uncertainty, and I can't imagine having this known uncertainty on top of all the additional uncertainties that we all have. It must be awful. I feel for you all.

[Deemail]

I have read all the replies, thank you all.
Ginpin I think I understand the reason why a couple of the family have fallen into the inconclusive category, it is due to the cag repeats not been high enough to give a definite yes or been low enough to give a definite no, sorry that's a very simplistic version I know it's a little more technical. Do you mind me asking if you know during counselling if the councillor is able to get a good overview as to whether or not a person at risk displays tendencies towards the disease. The reason I ask is because in the counselling they apparently ask a lot of questions regarding relationship and work history. After one of my in laws was given the all clear the counsellor said to her she knew from the counselling that she was clear. From what I can gather Hd positive people can display certain personality traits even before they develop symptoms. Has anyone else heard this.

Regarding the secrecy and stigma, it is hard because I would like to be open but at the end of the day I have to respect that if my in laws don't want to be then its not my place to go informing all and sundry that they and their children are at risk.

I worry hugely what would happen to my dh if our relationship broke down, I have no intention of letting this happen but I have seen firsthand how unreasonable people with HD can be and how once they make up their mind their is no changing it. I mentioned to dh about maybe putting a plan in place kind of like a reference for himself in the future. So that he could write down now how whether or not he wishes to avail of the treatment available, whether he wants to do all he can not to alienate people. Maybe it would be something he would refer to or I could ask him to refer to if any personality changes were making his life difficult, does that make sense?

Two of the kids are young teens one is not far off. Dh is not keen on mentioning Hd and never does he wants to wait until he has the test. I mentioned this to him last night and how we were not really discussing Hd with the kids but we hadn't decided on testing either and that it's not fair on them. I mentioned it in a short conversation today and again the eldest said what's that!! I explained it briefly but didn't go into statistics or possible age it develops at or mention testing, I don't actually think they are aware of testing for a future illness.
Dh wants to be able to let the dec know if they are or are not at risk, he doesn't think it would be fair to leave them hanging. We had agreed a time frame it's just it came and went so quickly. He says he wants to know but I don't know if he could live with a positive result.

[OneLittleToddleTerror]

cardamomginger the main thing I wanted to know from testing myself was whether to have anymore children. And also whether I need to tell my daughter when she gets older. (I already had a daughter when I was told the news. It's a late onset disease and according to wikipedia the first diagnosis was as late as 1995). I would assume something like this would affect people's decision to have children or not.

[OneLittleToddleTerror]

Also cardamomginger my brother has no children and didn't want any. (I've mentioned he hasn't tested himself).

[Deemail]

Also I want to separately thank everyone who is facing the same or similar devastating illness, for sharing. There are so many genetic illness I wasn't aware of a few of them until ye posted. I. Wish ye all the best.

[Deemail]

Sorry just to clarify I do no want the children tested, I couldn't make that decision for them it wouldn't be fair. I want dh to be tested at some stage so the dc will know whether or not it is something they need to be concerned with.

Dh does say he wants to be tested but that he has been lazy about doing it due to lack of time, I'm not sure i believe him. I'm not sure i believe him, I know I could start the ball rolling and he would go along with it but that to me feels like I am forcing him. On the other hand he could procrastinate forever.

[Andro]

Deemail - with regard to time frame, I studied basic genetics - which covered dominant and recessive genes and the basics of how genetic conditions are passed on - at ~14 (I don't recall whether it was the end of KS3 or part of KS4 though). HD was one of the examples used so if your dc know that one of their DGP's have it they will learn that their father is at 50% risk (and likewise themselves if your DH has it). I'm pretty sure that learning about the risks from their biology teacher would be a pretty lousy way to find out.