He reveals a secret.....a genetic disorder.

**Beautiful Disaster** · 11-08-2009 06:59 AM

Wow, finally someone who knows about Huntingtons!! Over dinner one night recently, I asked him a question about his mother (not about HD) and he ended up telling me that her father (his grandfather) has huntingtons as well....and also his sister. He said she tested positive for the gene back when they found out their mom had it. She has since had two kids. I have very mixed feelings about that. Lots of keeps need homes, instead of continuing to pass down this genetic disorder, why not adopt? However, at that time in his life he decided not to get tested afraid that if he tested positive, it would take away his motivation to pursue his dream career (law enforcement). He asked me how I felt about it etc and I was quite honest. I told him that clearly this would be something someone thinking of a future with him would want to be aware of. I told him that I thought back to the instance with him that I thought I may be pregnant,and how totally unaware I was that I could've quite possibly had a child with this disease. He asked if it changed how I felt about him, I said no..... it just changes things. And it does.

At the same time, I'm moving forward with our relationship because I care for him and will just have to see what the future holds I suppose.

This is the firsttime I've heard of HD, so a new one for me. Very ugly disease.

**WildChild** · 11-08-2009 09:02 AM

Encourage him to get tested. Assure him that it won't be a deal breaker but if he wants to plan a future with anyone he should know if having kids is is the picture or if adoption would need to be the option.

My kids father turned out to carry Thalsemia and there is another genetic disease in the family as well. I knew one of his siblings had a child with two serious illnesses and another who had died in infancy but I assumed it was because his sib had married a first cousin. That certainly increased the likelihood of their children having it. They had 6 kids - one who died and another who has had millions of dollars worth of care (at tax payers expense) and who will probably die before 30. I see that as mean and short sighted. The child and family have had a miserable life.

My kids' dad actually has the "minor" form of thalsemia and while my kiddos show no signs of having the disease in any form (it would be noticable - like chronic fatigue) I've raised them knowing that before they marry or have children they have to be tested and if they carry the genetic componet, their intended will have to be tested. If both have it the chances of a child getting the disease is high.

In this time period we are no longer under pressure to have children as The reason to marry (indeed we need fewer people having so many children) but it would be inexcusable, knowing it is in the family, not to get tested. Knowledge is power, it gives you the opportunity to make informed choices and reduce some stress in your life.

**Karma3** · 11-08-2009 09:20 AM

If you google Huntington's disease you can read all about it. It is not a very nice disease, no, but you need to put yourself in his position. Huntington's can effect you later in life, and you say he has never been tested? Personally I wouldn't get tested either. Wouldn't you rather not know and continue enjoying life, then knowing that you are going to be stuck down with this later in your life and living day to day anticipating when it's going to happen? I know a family who's child has the juvenile disease, which means this was passed down from one of the parents. Both parents have chosen not to be tested and I think that is a wise decision. If you read about it, they also mention that people even commit suicide because they can't handle the thought of what is going to happen to them.
We don't have perfect lives. We are all afflicted with some sort of disorder, some people cannot even conceive children. If I was getting married and my fiance suggested that I be tested to see if I could conceive children and if I couldn't, he wouldn't marry me...well let me tell you, I wouldn't want to marry him. Love is love, if you have your heart set on finding the perfect man with the perfect sperm then I suggest you move on? You mentioned that his sister had two children and that you think she should have considered adopting, and yes this could have been a consideration....is this something that you could consider if you marry this man?
This man wants a relationship and wants to be loved. Look at Michael J Fox, he is still married and has children, know one knows what kind of hand that they are going to be dealt in life, but when you love someone you learn to cope and just move on.
If this disease is something that is going to eat away at you in this relationship my suggestion would be to move on because it's really not fair to him either. He is living his life to today and I applaude him for that!

**Beautiful Disaster** · 11-09-2009 08:23 AM

WC - totally agree....

Karma - Perfect man perfect sperm? Not quite. Anyone here that knows me knows I'm brighter than to expect such. "If I was getting married and my fiance suggested that I be tested to see if I could conceive children and if I couldn't he wouldn't marry me...." Key words there: getting married. Fiance. I have been dating this guy for 4 months. We are not engaged. I am at that crucial point in the relationship where I can allow things to move forward in my heart, I can allow myself to fall in love with him, or I can stop the feelings from moving forward. I can assure you that if I was married and found out my husband had a disease, I would spend my life and all my effort taking care of him and making sure he lived as good a life possible. But I'm not married....I'm not to that point. But there is part of me that thinks I do want to get married someday. And if I do, I would love to have children.
I think if you choose to live your life single and without children, then if you choose to not get tested knowing you have a 50% chance, then more power to you. But the very second that you add someone else into that equation that changes.
Yes, his sister had two children. I can assure you that the one night stand she carelessly conceived her first child with had NO IDEA that he was potentially conceiving a child with someone who KNEW they carried this disease. And absolutely, if I married a man I knew carried this gene (or if I did myself), I would adopt. Why care more about passing on my genes and seeing a face that looks like mine, than for the fact that this child will have a 50% chance of suffering this fatal disease? Doesn't it make more sense to stop the genetic disorder in its tracks? Especially considering the millions of parentless children in our counry with no one to love them.

He has not lived his life for today. He has harbored this for years......he lives with it every day, the fear of having this disease.......SO much fear that he has been incapable of even talking about it AT ALL to anyone until now. That's not living a life of freedom and seizing the day. That's living a life of fear. Seizing the day would be freeing yourself from the fear, finding out the truth, and then making the absolute best of it.

After tragically losing my father, I live every day in fear of losing people I love. Irrational? Yes. Wasted worry? Absolutely. But I deal with it just the same. Do I want to allow myself to fall in love with someone under these circumstances? No. I need clarification...I need truth. I do not fall hopelessly blindly in love with no regard for my future.....I'm not one of those girls. Am I at the point to say "Don't worry about getting tested, if you have it and get sick within the next 3 years or so, I'll spend the rest of your life taking care of you...and IF we have time to have kids through the health issues, then we'll adopt and I'll take care of them too?" No. I'm not at that point. So I'm stuck. Stuck having feelings for someone and knowing that I can't allow those feelings to move forward under the current circumstances. Stuck feeling insecure, confused, disregarded. Stuck because I don't want to just kick this person to the curb. STUCK. And if those feelings make me shallow......selfish......then I suppose I will embrace those labels.

**stressed** · 11-11-2009 12:38 AM

The only solution to this is problem is a gene test. Selfish or not, it is as you said, because that is how you feel: if he has it then you don't want a future with him, if he doesn't have it then you can continue. Continuing this relationship while you are 50% out of the relationship won't lead anywhere. It may sound cruel to say "I don't want to marry this man if he has a fatal disease" but this is about your future as much as his. If you would have been married, would have shared a lot together and then suddenly he would have got a fatal illness is another issue and I understand what you mean by that.

Sure, not knowing and enjoying every day is a point of view, but one cannot make long term plans without knowing the facts. What if he does have it and then your child has it and you end up trying to survive on your own? Certainly, when you love somebody you must support him as much as possible, but you are not obliged to carry his own cross unless you want to make a career as a saint (not recommended).

On the other hand I can also understand your boyfriend. If he takes the gene test now and it turns out positive then he will feel his chances for having a family are vanished. He knows he will lose you if he's tested positive. I also think he's aware of the fact that if he would have told you about the disease during your first few dates then you would not want him anymore.

It is a circle but that is so because he is afraid of looking at the truth. I have a friend with a cancerous gene disease (he has to remove growths every once in a while as otherwise they will rapidly turn into cancer), who now has three children, two of them tested as healthy. The thing with him is that he could have known on the day of the child's birth about the disease or wait until the child turned out to be 10 years old. He chose the 10 year waiting street only to find that at least two of them are healthy (have to wait a few more years for the third). Well the fact is that all these years of waiting led him to depression and low self esteem, wondering every day whether he has passed on a cancerous gene to his children or not and whether they are going to hate him for that, only to find that he hadn't and that he was depressed over nothing. After this experience the only thing I can say is that it is better to know and deal with it than to ignore. Some say "but the news might hit him too hard and he can commit suicide", I say you have to take the chance, especially when there are more people involved. Because with this reasoning then people who suspect they have AIDS don't have to be tested either, since that would ruin their own lives and it's better to live every day than worry about how your actions are going to affect others etc etc.

There is only one equation for this: Possibility of Disease + Relationship = Test --> Seek solutions to improve your live based on the results. Anything else is just theories and emotions that don't reflect the practical side of this world.

Suggest a gene test and calmly explain why. Your posts show that you can do it in the right way.

**amaranthine** · 11-11-2009 06:53 AM

I understand both sides of this... that he wouldn't tell you for fear of early rejection, and that the issue is something of rather grave importance to a long future together. I believe each person will vary on this point.
Personally, I would want to know. I would not want to give my heart and soul to a man who could knowingly only commit to me for a relatively short period of time. That may be his lifetime, but it does not have to be yours. I agree that it is selfish to keep such information to himself. I'm also just about certain that it is illegal to withhold that kind of information from a to-be spouse, for this exact reason. Is it fair that you resign yourself to a short marriage, or fair that you could give your children a reduced lifetime? No, I don't believe it is.

Then again, this assumes that he does have the disease. He may not, and then this worry would be for naught.
As far as finding out for sure, I believe that is your right.

**KMonte85** · 11-11-2009 07:18 AM

Key words there: getting married. Fiance. I have been dating this guy for 4 months. We are not engaged. I am at that crucial point in the relationship where I can allow things to move forward in my heart, I can allow myself to fall in love with him, or I can stop the feelings from moving forward.

I'm sorry, this probably is not going to come out as eloquently as I would prefer... but just as you stated, You have not made a long term commitment with this man. If you are at a crossroads about doing so because of a genetic disease he may have, but has not been tested for, then perhaps it is just in your best interest to move on now and allow him to find someone who WOULD marry him regardless if he has the disease or not, and yes - those women are out there.

Truly, he owes you nothing. You have not made a commitment to him yet, you are dangling that option in front of him like a carrot. If the man does not want to get tested, that is his decision, just as much as it is yours to leave him if he were to be tested.

Think how this looks from his view... right now there is a chance he may or may not have it, he doesn't have a death sentence or an expiration date. If he gets tested, not only does he get scientific proof that he will die early, and painfully, but he is also probably going to be dropped by his girlfriend because of it. Why in the world get tested?????

Do I want to allow myself to fall in love with someone under these circumstances? No. I need clarification...I need truth. I do not fall hopelessly blindly in love with no regard for my future.....I'm not one of those girls. Am I at the point to say "Don't worry about getting tested, if you have it and get sick within the next 3 years or so, I'll spend the rest of your life taking care of you...and IF we have time to have kids through the health issues, then we'll adopt and I'll take care of them too?" No. I'm not at that point.

Again, if after 4 months of being together, you are thinking about marrying him IF he gets tested and IF it comes back negative, then maybe just let him go now. He is what he is, genetic diseases (or not) and all. Maybe you need to allow him to find someone who will love him for exactly what he is. There are too many if's in his current relationship for it to be fair to him.

**Beautiful Disaster** · 11-11-2009 07:46 AM

Thanks to those who have responded. I appreciate your support (whether agree or disagree with me!) during this time....

KMonte - I don't think I at any point said that I WOULD leave him if he tested positive. My problem is I don't know what I'd do, I don't know what TO do, and that's why I'm writing about it.

If he tested positive and we stayed together, we'd both have to acknowledge and accept that both of our lives would be drastically affected. Should we marry? That would be a decision. At best, we'd adopt children and he wouldn't develop symptoms until later in life, allowing us both to raise children and live happy lives etc. At worst, he'd develop the symptoms early on (which is most common), there'd be no time or money to adopt kids, and we (yes, I said WE) would live a life of suffering. Or we'd adopt kids, he'd start to suffer symptoms, and then our children would have to grow up watching their father die.

My point is, I don't know if I can acknowledge and accept that kind of commitment after being with him for 4 months. And what I get from you, KMonte, is that if I am not able/ready to do that after 4 months, I should leave him now because it's potentially not going to be fair to him if I leave him later on.

He owes me no more than I owe him. But as a responsible adult who has willingly taken part in this exclusive relationship, I owe him honesty. For instance, if I tell him I'm on the pill, it is my responsibility to make sure I take it. If I'm on antibiotics that counteract the pill, it is my responsibility to tell him so that we can use alternate protection. It is my responsibility to tell him things in my life which can/will affect him too. And I strongly believe that it is his responsibility to do the same. For instance, he knows that my current bc has caused me to lose my libido. He has asked that I try another pill even though that is the only negative side effect. Why? Because he's affected by it. But it's my body, my business, my choice, right? Yes......but he is affected by it, therefore he is involved.

He adores children, yet has told me in the past he "doesn't know if he wants kids". Why? Not because he doesn't want them, because HE doesn't know if he carries that gene. So was he honest with me about that? No, he wasn't. And truly, if I hadn't basically backed him up against a wall and demanded to know what in the world was going on with him, I'd still, TODAY, not know this.

If you were dating someone, really clicked with them and continued into the relationship but they told you they were waiting until marriage for sex.........you stayed, admiring their abstinence only later to find out they have HIV, would you think that was ok?

**Karma3** · 11-11-2009 07:51 AM

I totally agree with Kmonte85. You said his sister has been tested and chances are so has he. He has not been forthcoming talking about it because he maybe has tested positive? I mean, you said he hasn't said anything like "I've been tested and luckily I was negative" or "I'm afraid to get tested because of the outcome". I would read between the lines and just assume that he has the gene. I am also thinking from his point of view, everyone deserves to have someone in their life regardless, and although his disability may not suit some, there believe it or not are others that would love him for who he is. Married or not married that should have no bearing....love is love.
I think you should save face and just assume that he is positive and walk away from this relationship. You mentioned in your other posts that he is keeping secrets from you and he is tricking you into loving him, and possibly ruining your future of getting married and having children. I don't think this is a conspiracy against you, I think he is looking for unconditional love and it doesn't sound like you are willing to give that.
Leave this man and leave him with his dignity.

**KMonte85** · 11-11-2009 07:55 AM

If you were dating someone, really clicked with them and continued into the relationship but they told you they were waiting until marriage for sex.........you stayed, admiring their abstinence only later to find out they have HIV, would you think that was ok?

quite different. Fatal genetic disorders will undoubtedly have an emotional affect on both of you and will determine the length and quality of your future together. But genetic diseases are not contagious. Nor is HIV fatal nowadays.

But I see what you are trying to get at... if his potential for carrying this fatal gene is something you feel you NEED to know, please understand his standpoint that he may feel it is something he DOESN'T need to know! And what I am trying to say, is that if you can not live with that possibilitiy, then perhaps it is time to move on. He is under no obligation to be tested and he should not be forced into it. From my perspective (not sure if your boyfriend is thinking the same way), I would in no way at all want to know if I carried the gene. I would have to walk around for the rest of my life knowing that I will die painfully and probably quite young. I would rather enjoy my life (ignorance is bliss).

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