(Closed) Husband could be at risk for Huntington's (& I've never heard of it before)

posted 4 years ago in Wellness
Post # 2
1234 posts
Bumble bee
  • Wedding: October 2016

I have professional experience with Hungtington’s.  I also have a friend whose father has it who is in his 30s and has never been tested.  Having seen it first hand, I couldn’t consider having children with someone who had the gene without knowing.  However, he needs to make sure that his life and disability insurance policies are in order prior to getting tested.  

Post # 3
5090 posts
Bee Keeper
  • Wedding: December 2014

deedee2016:  Sorry that you and your Darling Husband (as well as his family) are having to deal with this. As a neurobiologist, I understand what Huntington’s is, but I don’t have any personal experiences with it. I think that you need to let your husband come to terms with this for now. The testing isn’t going to change anything in the immediate future, so you have a little bit of time to make a decision about it. If his mother gets tested, that could tell you all you need to know (provided she comes back negative). I know that I would want to know, the unknown would give me too much anxiety. I would also want to know for the sake of potential children. 


ETA: Like PP, I was also going to mention about disability/life insurance. I’m not sure how his grandmother having the disease would effect that now, even before he’s been tested, but that is something that you should look into.

  • This reply was modified 3 years, 8 months ago by  SithLady.
Post # 4
7879 posts
Bumble Beekeeper
  • Wedding: October 2010

I worked in hospice care for 13 years and we had a family on our service who had two of its members who had it at different times and they were truly two of the hardest cases we handled (and that is saying a lot). I don’t say any of this to frighten you, but the diagnosis is life altering. I also would not have children if my spouse was a carrier.

Post # 5
202 posts
Helper bee
  • Wedding: July 2014

deedee2016:  I’ve also had professional experience dealing with this disease . I can tell you that like most progressive neurological disorders, people may share several characteristics but each person progresses in their own way( still rough and debilitating) . I definitely recommend your husband get tested and also have some sort of counseling available to him (and you) in the event he ends up testing positive for it. I would also look to see if there are any sort of caregiver support groups for Huntington disease in your area. Even if he’s negative or a carrier ,it may help to hear from other caregivers/families about  issues they may be facing or how they handle things in order to better understand the disease process.



Post # 6
2146 posts
Buzzing bee
  • Wedding: July 2017

Huntingtons is pretty nasty from what I do knoe – it was bad enough that there was even talk about forced testing and even forced abortion a while ago (although it obviously came up against human rights issues) but they HAVE done a similar thing with Thalassemia in some countries where you have to be tested before marriage and cant marry or have children if your both carriers (I know because im a carrier) the thought is huntingtons is genetic and doesnt occur randomly, if they kill of the carrying genepool by not letting people pass it on to children then it should completely vanish from society

im not sure what to say but good luck



Post # 7
11469 posts
Sugar Beekeeper
  • Wedding: June 2015

I know someone personally, or knew, who suffered from huntington’s. it was brutal, and so heartbreaking for the family. 

I’m not trying to scare you, but you do need to plan for it so it can be very helpful to know in advance. 

Post # 9
5158 posts
Bee Keeper
  • Wedding: January 2010

He really should get in touch with a genetic counselor. They won’t test him off the bat, he will need to go through counseling to decide if he really wants to do it (and they may even request he follows a waiting period before testing). Ideally his mother should test first because if she is negative, then he does not need to test, but if she won’t, then he has to decide if he wants to go ahead, but either way it has to be his choice. I don’t have direct experience with Huntington’s, but I do with other hereditary risk in my family I tested for, and the decision HAS to be his to make for many reasons.  I do have a friend from a family of Huntington’s carriers (she is not a carrier however) and well, I won’t lie, the disease is horrible for what it does to individuals, families, and so on.

But, whether he does not test, or if he tests positive, you also need to make some decisions about having children (or at least look into methods that allow you to screen embryos etc if possible). It is not a future risk I would want to wish on a child, personally, or just be willingly blind to. There is more and more research into cures and slowing progression, but there is NO CURE now. If someone is a carrier, it is not a matter of IF they will start displaying symptoms but when, and from there the progression and prognosis is well known even if there are individual variances as to the speed of that progression and so on. 

Post # 10
7430 posts
Busy Beekeeper
  • Wedding: February 2013

I have family friends who have it/are possible carriers. One of my good friend’s mom has it, and was diagnosed about 5 years ago, although we all suspect she’s had it for a much longer time. They also think her mom’s dad probably had it, and it may be why he crashed his plane and died in his mid 30s. My friend said that she didn’t want to go through with genetic testing for herself, because she didn’t want it to influence her decision to have kids. She figured that she still would have wanted to be born and lived the life she’s had even if she was/is going to have Huntington’s in the future. She has 2 little kids now. I’m not sure if her 2 siblings have had genetic testing, but one of them also has a new baby.

Post # 11
1151 posts
Bumble bee
  • Wedding: October 2015

I know a girl whose dad had it.  She decided to get tested and was thankfully negative.  I don’t know her that well but we are FB friends and she recently posted a bunch of stuff about it, so I learned a lot.

Check out the book Inside the O’Briens by Lisa Genova, which is mainly how I know about Huntingtons.  It’s fiction, but it’s well-researched and tells the story of a family where the dad found out he has it and the 4 adult children are dealing with it and deciding whether to get tested.  (The same author who wrote Still Alice, which is about Alzheimers.)  

Post # 13
5158 posts
Bee Keeper
  • Wedding: January 2010

pickles325:  Yes, that is a good book – good recommendation.

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