My son is recently (just days) engaged to a 28 year old woman (8 years older than him) who is at risk for HD. Her mother died from it, her mother's mother died from it and her mother's only 2 sibblings have it. I am just learning about the disease, it's symptoms, the risk factor, etc... And I must say I am an emotional wreck!! My future daughter-in-law already has 2 very young children by a previous marriage and she and my son plan to have at least one together. She is totally opposed to genetic testing and my son supports her decision. I am new to this forum and in no way want to offend anyone, but I just cannot help but feel that chosing not to test and also chosing to have children is irresponsible and cruel!! How could you have children knowing the great risk you are passing along for them to not only endure this disease themslves, but to have to lose their mother at a young age? After reading as much as I possibly could get my hands on over the past couple of days, I sincerely would not be surprised if tested that my future daughter-in-law would be positive for HD. There are just too many of the early signs and symptoms that before ever knowing anything about the desease have caught my attention as "odd" about her. I pray that she is HD negative, but am just worried sick that if she is positive the impact this is going to have on my son and any future children they may have. I look forward to hearing feed back from any of your directly affected by HD. Your pros and cons for testing, etc... I know that ultimately this is a very personal decision and one only my future daughter-in-law can make. It is her life. But ultimately her decision to have children will effect our whole family should she have it and leave her children motherless at a young age.

My husband has HD. Unfortunately, we didn't know until AFTER we had 3 kids. I know how terrifying it is knowing that my kids are at risk. While I understand not wanting to test, (I'm not sure I would want to) I don't understand having children knowing that they would be at risk. I feel that if you are hd positive and still want children then pgd or something that could rule out hd would be the way to go. Have you mentioned that to your son? Have him watch a video about jhd and see if he then would still be willing to blindly flip a coin. Don't get me wrong, I love my children more than anything, but it's scary to know that they may have the same fate as their dad. If I were you I would sit down with your son and make sure he knows what he is getting into. It's not an easy life.

Thank you Judy for your kind words of wisdom. This is all such fresh news for me I'm still trying to process it. My son has only known his fiance for 10 months and although he knew from the beginning that her mother had died at 39 years of age from HD I'm not sure he has ever researched it or knows just how awful the disease is. I didn't even realize until just a couple days ago or even know there was genetic testing until I heard the fiance mention it today! I tried saying something to my son and he basically told me he was not worrying about it! I am so upset about this I just want to cry!! I am currently visiting my son and his fiance in another state and next week my son will be going home (alone) with me for 10 days. I'm hoping I can have a serious talk with him about this along with his older brother and sister in the hopes he will try to change her mind about testing. And in all honesty, his fiance is the type of girl who will pretty much do anything my son thinks is right. So I feel if we can get my son to see the importance of testing she will get tested. Do you know of any specific videos or reading material I could have on hand to educated him about the disease? Thanks again for your input! May God bless you as you deal with this horrible illness in your own family!

My son's father has HD. He decided that HD was not something I needed to know about when I told him I was pregnant. Then, when I was 8 months along (turned out to be exactly one month before my son was born) he sends me a letter. It was the letter that his doctor had written to him when he got tested. His CAG is 48. I am terrified.

If I knew when I got pregnant about HD, I would have had any tests they would have given me. I think knowing is better than not knowing.

I am sure your son is sensible. And having him alone maybe you can talk to him. He could at least get some time to think about it. and look some things up while she is not there telling him it is no big deal.

Good Luck!

Thank you!! His fiance is not trying to down play it by any means. She saw her mother suffer and die from it from a very young age. She was only 14 when her mother passed away. So she knows the seriousness of it. She just prefers to keep her head in the sand as to her own prognosis. I just feel that it is something that will affect our entire family and particularly my son should she have it. And if she doesn't, then getting tested will alieviate a lot of worry!

I guess I'm a little confused as to why she would choose having more at risk children when she knows what a terrible disease it is. Even if she is in denial she must worry about her kids. What kind of things are you noticing about her that make you think she has HD? You can look videos on you tube and this site has great info about HD. Invite him to read some of the posts on here. There are a hand full of members with children that have jhd. I'm not saying that he shouldn't be with her, but he needs to go into it with eyes wide open! It's not for everyone!

Judy that is exactly what has me so upset and puzzled!! Why would you inflict a child with such a high risk of getting this awful disease? My son has such a big heart and I know he hopes to eventually adopt the 2 young ones she already has besides wanting more children with her. And he being so young (only 20) could be facing a life time of caring for not only a wife with HD but several children! I don't intend to try and talk him out of marrying her, just to try and get her to test before they consider more children.

To answer your question- some people choose not to test because without a cure or treatment that slows progression, they don't see a reason to test; some don't want to give up hope of not having it to find out they definitely will; some don't want loved ones to look at them with pity eyes every time they enter a room; some are afraid they will lose insurance or insurability, employment or employability, or even the license to drive; some figure that even with an HD positive result, you still don't know for sure what's HD until you get to unmistakable motor problems, and once you exhibit those, it's so obvious that you don't need the test; some may plan to postpone testing until they reach certain milestones, like having children, getting sufficient insurance, finding secure employment etc. Some may worry that they won't be able to handle being HD positive- that they'll sink into a terrible depression, be suicidal, or give up. And some may just not want to think about it.

CamryinTx that all makes perfect sense. Except for the fact that my future dil knows her risk is high and has chosen to bear children NOT knowing if she has it or not. AND she is planning to have more!! No matter how I try to reason this out it just seems mighty selfish and irresponsible to me. Her decision NOT to test may be her perogitive but it sure will affect many lives should she come down with it. I know positive test results would not keep my son from marrying her, but I'm sure he would not have more children with her.

Bh- Your situation definitely sounds difficult. I was trying to think of reasons people in general may have. Given the specifics of your son's fianc?e, I can see why you're upset. Like you, I would think that a decision to marry and have children would be a great reason to test.

Hey, one of the symptoms I have noticed with my son's father is denial. Even though he has tested gene positive and his father died at age 46, (R is 38) he tells me he does not have any symptoms and that he has no problems even though I can see the problems. One thing that really clarified it for me was when he told me he had tried to make a dr. appointment but they wouldn't take him for something that will happen 25 years in the future. This kind of denial is more than just not wanting to face it, it is called organic denial. Find and read the Physician's Handbook on HD, it has helped me very much. And this site has been a lifesaver.



Edited 1 time(s). Last edit at 08/15/2012 03:26PM by salamandah.

Your son has only known his fiance for ten months so the bloom of romance is still high. Plus he is in his early 20's. As hard as it sounds see if he can pospone the wedding at least a year. Sounds as if they are rushing into this.
I respect her decision not to test, after all it is her decision. Suggest to him that he see a genetic counselor with her. It is only fair to both of them. If she refuses then he should go alone, maybe seeing a professional might clarify things. . I would try to help him keep an objective viewpoint in understanding what is ahead of him.

Thank you Salamandah and Bridie!! Yes Bridie they are indeed rushing things. And to make matters worse my son is in the navy and has been deployed for the past 6 months. So although they have officially been dating for 10 months, they've only had time together for 3 (He went out to see for one month and came back prior to the 6 month deployment) I'm just hoping and praying when we get back home for his 10 days of leave without the fiance that his older sister and brother-in-law (both nurses) and his older brother can help me open his eyes to the seriousness of this.

Ask her how she enjoyed being raised by a mother with HD. It can be okay, and it also can be torture and murderous literally!
Another reason they may not test, especially if they are showing some very early symptoms, is poor decision making. Pat

I understand a person deciding not to test, but knowing what this disease does and rolling the dice with having children? I don't understand that.
Both of my sons have HD and I have 3 grandchildren that are living at risk. My oldest granddaughter is beginning the testing process now and I pray that she will not test positive. I have lived with Huntington's in my life since I was 16 years old, I never knew what it was until much later, after my sons were grown!
I watch my ex-mother-in-law at 76 years old, 2 children already passed and one who is my age in the late stages. She has grandchildren and great grandchildren living at risk. She will not see an end to HD in her lifetime. Quite a sobering thought.
The only way to stop this disease is to not have children without PGD or amnio testing.
I hope your son learns about HD.

Take care,

Carla



Edited 1 time(s). Last edit at 06/03/2012 01:05PM by carla.

I don't think ANYONE can understand the why's and what fors in this situation!! And NO ONE knows what they would do in the same situation unless they have faced it!! I had 5 children before I knew what HD really was and decided not to have anymore, but I did have an oops and now have 6 children. I would not have aborted her if I knew she had HD!! And I feel like having kids with HD is unwise at the very least! BUT if I were faced with the same decision I can't say what I would do!!!
I have sons and I would be heartbroken if the person they were marrying had a terminal illness!!! But I raised my sons and I will be by their side no matter what, as I am sure you would do the same for yours!! What I am saying is that when our kids make hard choices that lead to sad circumstances as moms it hurts us as much as it hurts them!!! Theres nothing worse than seeing our children suffer! But it is his choice, I do hope however that he goes into this with completely open eyes to the ins and outs of HD!! He deserves the truth!! Having him talk to someone with mid stage HD or a genetic counselor would be great!! I know how hard it is trying to raise children and struggling with HD, saying its hard is soooo an understatement, its hell! I love my children more than anything but HD can be stronger than that love and cause emotions overload that the children have to deal with! Makes me sad!! But I can't control it!!
Goodluck!! I'm praying for you!!
Melissa

Thanks Melissa!! Right now my #1 priority is making certain my son is aware of what this disease is, what it does and how it will impact his life should his fiance have it. And the risk involved for any children they may have. At this point I have no idea how much he actually knows about it. If I had to guess I would say he knows very little. We will be heading home this coming Thursday and his 2 older siblings, brother-in-law and sister-in-law and I will be sitting him down to discuss it in detail. In no way am I trying to talk him out of marrying this girl. My only concern is her testing so it's not passed on to future generations. I could even respect her decision not to test if they weren't planning to have children. I just don't think it is fair or responsible parenting to have children when you know the risk involved in passing on this dreaded disease.

I feel like I need to say something in all of this. I am recently engaged, and also recently found out that HD is in the family...up until 3 months ago I had NO idea what HD was or that it was in my family. Once we found out, my father got tested and sure enough, he has it. So let me ask you this, as a person that has always DREAMED of having kids and a family am I supposed to give all of that up because of disease we can do nothing about at this point? It is a little selfish to say that yes, my soon to be husband and I are going to have kids and that I probably won't get tested. Getting tested is not a matter of just going to the doctor and getting tested, it's a long dreadful process in which you have to have several things in place first. Since i've found out i've gone through the roller coaster of wanting to get tested and not wanting to get tested. But what it really came down to was what my fiancee and I thought was best for US. If people knew that their child was going to get cancer, would you expect them to not have a kid? As a mother I understand your concern, but you are not in their shoes or your daughter in laws shoes. You should be grateful that she shared such personal information with you, not many HD positive share that side of their lives for this very reason, people over reacting. You can educate/scare your son until he's blue in the face but that doesn't mean you can change his mind....if he loves this girl, of course they want a family together...it's what you did right?

Aren't there ways that they can have HD-free kids without knowing if she has the gene or not? I don't have time to find the link right now but hope they can get that info. I know that doesn't solve the concern about a child growing up with a parent with HD, but as long as the likely-healthy spouse has their eyes wide open about the possibility of caring for both child & spouse, and the HD-possible parent agrees that the other parent should always put the child's needs above theirs, it is a decision they'll have to make as the immediate family.

You should make sure they are reasonably aware of these things, suggest that your son spend a little time on this forum or otherwise getting educated about what family life with HD can be like (since it doesn't sound like he knew her mom), and express your concern over being responsible for helping them if their decisions leave them in need of help. Maybe you can even get your son to see the possiblity that she may already have symptoms, by seeing/reading about some early symptoms & denial in others. But people can just as easily have quirks without HD too. Lots of people have gone through testing, driving themselves crazy symptom-hunting, and turned out negative.

I CAN totally understand not wanting to test. I didn't experience it, but I experienced the extreme stress of a positive result. I don't otherwise have depression; in fact I am a very positive person; but that really got me down for a very, very long time, and remains a constant cloud over my husband's & my heads.

Your son should also be aware that her judgement could be impaired if she does have early HD, and that he needs to bring extra cool & sensible judgement to the table for all major decisions, to compensate for that possibility.

There are ways to test a fetus and more are on the way:

http://www.latimes.com/news/science/la-sci-fetal-genome-sequence-20120607,0,7625263.story