Hello,

I'd just like to get as many people's opinions as possible on this topic. I'm 24 years old and have tested positive for HD. I have a brother, who is 28, who is also at risk for HD. My brother knows nothing about the disease and doesn't even know that he's at risk. My mother and the rest of the family do not want to tell him that theres a 50/50 chance he carries the gene. I understand my mother wants to protect him and she thinks hes not strong enough to handle something like this, but I feel he's a grown man and can handle the news, whatever it may be. She fears I want to tell him out of anger and spite, but that's simply not the case. He is engaged as of now, and will be getting married in April. I feel its morally and ethically the right thing to do to tell him before he gets married. My brother and his fiance have a right to know what their future holds, especially if they plan on having children. So my question is this: Knowing there's no cure for the disease, would you tell your sibling they were at risk, or let them go on living their life in the dark? And why? Thanks in advance for the responses, I really appreciate it and any feedback will help.

Have your mother and brother seen any other member of your Father's family with HD? I ask due to wondering why your Mother does not want to acknowledge the fact. (I understand why your Father would not as it could be a symptom). I am thinking she has not.

Are you still caring for your Father? Is he showing any chorea as that is the visual symptom that should cause your Brother to ask about.


Your Brother should be told. If your Brother has any current depression then I suggest he have some type of supervison following.

I will agree, you are in a difficult spot. Of course no one can give you the right answer the only right answer is the one you feel best suits your situation. For what its worth I will give my two cents.

I have children close in age to you and your brother. When I was diagnosed, I felt it was my responsibility to let them know and let them know what I learned through counseling in the testing process. HD was not on our family radar. They have not chosen to test at this point and their feelings are why test now when there is nothing we can do about it. Wait until there are questions that may indicate HD. My oldest and his wife (being informed) chose to have a child without testing. He is the most precious little boy. Yes, I look at him and my children and wonder if they will be affected. They said it would not change their decision to have children. Yes it is a gamble and I have seen others here that it consumes by knowing and I can't blame them. I think we are all consumed to some degree by the knowledge.

I don't know your family dynamics but you may want to try bringing your Mother over to your side slowly. Give her some time to digest a few things by letting her know you have to let your brother know. You are willing to give her some time to think about it but it is something you feel is your (or their) responsibility. He then can make an informed decision just as you did. If there are mental health issues, certainly address those first.

Good Luck,

Mike

As a sibling that is positive such as yourself, you have a duty to tell your brother. If you don't tell him and he finds out down the road after he gets married and has a kid(s), it will cause a guilt rift that neither of you may be able to fix. A lot of parents will tell you not to worry until there is something to worry about. This is mostly driven by guilt. But they don't realize that all they are doing is pushing the guilt down the road. It's going to come out at some point no matter what. Whether that is with him just finding out that it runs in the family, or from seeing a family member decline. This disease is impossible to hide long term in this newer era where people live much longer lives, than previous generations. I am a product of one of these families (my father), and it wrecked his entire family. This is why myself and my family are trying to be as open as possible now that I have tested positive. One thing I know is if my family told me about HD after I had a family and they knew way before that, I would be pissed. Every child that he may have will have that same 50/50 chance of getting the disease. But there are now ways to have children that will not carry on this awful disease. Hope that helps some.

My family found out about HD and didn't tell me for several years. When I tested positive I was quite annoyed that I had lost time implementing an exercise and supplement regimen that I believe is helping keep me symptom free.

Tell him.

Will

I tested positive 5 years ago and still think about it every day. I think if I didn't know, how much better my life would have been. I don't support my kids testing, but I guess being at risk is not the same as being "positive". It may be the fair thing to let him know, but really with a wedding pending, its just so sad.

My husband's side of the family kept this information from us. We found out 4 years ago after my husband's biological father passed away. By this time, we had two children. My husband's mother fled with my husband and his sister when they were little as his biological father was very aggressive and abusive. In the late 90's after I started dating my now husband, he received a letter through his maternal grandmother from his biological father--it didn't contain much and certainly not this. We are furious that this information was kept from us.

My oldest son has autism and is 13 years of age. He is high functioning. He put the pieces together last year on his own; as we are still wrapping our heads around this and deciding what to do. He had researched hereditary diseases and told us that this was the worst disease that is passed along in families. A short while afterwards, he looked at me and asked me if that's what dad has. My husband hasn't been tested, but we are really concerned with things that have been developing for the last year and a half. I was honest with my son and tried to explain the best way I could--that his dad is at risk and what that means for him and his little brother. His little brother is still too young to understand.

It is hard. But to keep that information away, even if you believe it is for the best and have great intentions, isn't your place and can spark bitterness and unpreparedness.

Information is very important in life. This is one bit of information that I would not withhold from a loved one.

I know we have all heard of a white lie, or the saying, "what he/she doesn't know, won't hurt him/her". Does not apply here. This is the kind of information that affects people's outlook for the rest of their lives.

Just my opinion. I have a 15 year old son at risk and he asked more and more questions when he turned 14 years of age. I certainly was not going to lie or mislead him. To not tell him later on (if he didn't know as an adult for whatever reason), I just couldn't fathom that as a possibility.

I will speak from the perspective of the ex-spouse who married into an HD family.

The family knew but was in severe denial. A neighbour of the family told me I should ask what was wrong with the health of my future mother-in-law. When I broached the subject, the family denied a problem even though I learned later a doctor had suggested it was HD (this was prior to the availability of testing).

Did I ever feel betrayed ten years and two children later when the truth turned my life upside down. Needless to say the marriage didn't last, and that is the short story.

A young couple cannot build a healthy marriage on family secrets. Had I known I would have made very different decisions.

This young man's fiancée deserves to know the truth as well. Keeping HD a secret only lasts so long and then it is a game changer.



Edited 1 time(s). Last edit at 02/05/2015 05:06PM by Concerned partner.

He is an adult and deserves to have all the information so that he can make the best decisions for his family.

I agree with most posting here. I would certainly want to know as soon as possible and would feel betrayed had the information been kept from me. Very likely that this could change family planning choices in the near future that they may want to re-think. They should at least be given the opportunity to do some research before they have kids and have to live with the guilt of passing this on. I would say even if you're mother doesn't agree he will appreciate that you let him know so he can plan his future. Best of luck with whatever you decide! - Katie