Hi I am in desperate need for some one to help me stay positive and help me through a time that im sure alot of others have had to go through.
I am 22 and my boyfriend is 24 so obviously HD is still a fair way off, but he is about to go and get tested. his father has the disease and my boyfriend has always known he may get the disease too, he says he is ok which ever way the news is because hes had time to deal it, he is more concerned about me.
i keep thinking far too ahead, my mind is racing ahead of time.. marriage,children then the childrens risk. i am hoping that he doesnt have HD but i cant calm my nerves im starting to feel very distressed its like im grieving before its happen and i want to be strong for him if the results are bad.
Im lucky im able to talk to him about it as other people i know have been quite negative about the subject i've alreading decided i am going to stay with him no matter what but i need someones advice to help me calm down so i can get through this uncertainty no matter if he has it or not.
Plus has anyone had children knowing the risk involved and what are your feelings about it.
any advice will be appreciated.

32 yrs ago i was in your shoes but 32 yrs and 3 kids later i wouldn't change a thing .Still with him,he's late stages HD now in a care home .Hope everything turns out for you both.

I wish I knew the right answers, but I am glad that you found this forum. We never knew that HD was in our future. My husband is the first in his family to be diagnosed. He was tested for a few things and HD happened to be one of them. We didn't even know what it was. We have been married for 21 years and have 3 great kids. I worry everyday about them being at risk. If we had known all those years ago maybe we would had the chance to have kids who wouldn't be at risk. At least, you have that choice and you can prepare ahead of time. Has your boyfriend gotten insurance in place, like health insurance or LTC insurance? If he does test positive he will not qualify. Because we didn't know what my husband was being tested for we didn't know that we needed those things before hand. There is some great research going on, possible cures/treatments. When is he getting tested?

I've been in your shoes, except my husband was not and will not be tested. I was fine with his decision when we were your age, we began dating when we were both 18, now we're both 28. I didn't care to know back then, I figured we'd face it if it happened. Once I became pregnant with our first child though I became extremely nervous, it was even worse with our second. I wish he would have tested now when we were younger but then I wouldn't change the life we have for anything, even if he does someday develop symptoms. Good luck to you and I hope you two get to live the rest of your lives together free from worrying about the 50% possibility he currently lives with.

thanks everyone. he has to go to the initial counceling session next thurs the 21st july then we will find out testing sessions how have you all dealt with the issue and helped your partners?

I think you should see what it is you are signing up for personally. If his dad is around, go and visit him with your BF. Ask some of the other family that don't have HD and see what they can tell you.

HD isn't like Parkinsons or cancer. It's a whole different ball game because it's a neuro-degenerative disease. The personality changes along with the physical issues are so great that a lot of people cant handle that as well as some here on the forum do. And since the disease is passed down, the risk is that your children would have the disease too. That's a big risk.

And make no mistake, the disease doesn't necessarily repeat on ages. The disease can be more or less pronounced from generation to generation, so the victim can become younger and younger.

You need to see what it is before you make these kind of lifelong decisions.



Edited 1 time(s). Last edit at 07/18/2011 09:40AM by Fred.

One important factor that was also mentioned is that your boyfriend needs to get life, health and long term insurance in place before testing.
If testing proves positive he will never get those items and that could prove tremendously devastating in the future.

Before the insurances are in place I would hold off on testing - it is that important.

I'm sorry for your reasons for being here but glad you found this place! No time for a longer response today, but the Insurance Trio is Life, Disability, and Long-Term Care. THESE are the ones that you can be easily denied for in the US. Health insurance he should still be able to get, especially as part of a group. And GINA (genetic information non-discrimination act) says genetic information should NOT be considered for Health Insurance.



Edited 1 time(s). Last edit at 07/22/2011 07AM by smiling sara.

I would like to add that if you plan on applying for medicaid at some point you have to be careful about getting whole life insurance, (at least in NY) because it has cash value. Even for the spouse. I had to prove that I had term with no cash value.

Hello JC,
I am 25 and my husband is 26. He is at risk for the disease and we are struggling with what to do regarding starting a family. One of those steps is the decision to test or not (still unsure).

When I was thinking of the decision, it scared me. I asked my husband how he felt and he said " I think I do have it because I look so much like my dad, so it won't bother me becasue in my head I have it." It is true he looks ALOT like his dad...and that is why I also think he has it.....I am not sure how true this is...how physically looking like the parent with the disease correlates with inheriting the disease...

Anyway... I was scared, lost, depressed, angry. This was mainly becasue I felt that I would lose all hope if he took the test....as long as he didn't take the test I would still have "hope" that he didn't have the disease.

I learned after thinking and talking and praying...that my hope was in the wrong place... I hoped for my husband to not have the disease...when I should have hope in God..... that sounds strange...I know... but here is a little story...

There was a fierce fighter...never saw defeat... but one day another warrior caugther this fighther off guard and was just about to kill him until he noticed no fear in this figthers eyes....the warrior asked the fighter "Do you have anything to say? Why are you not afraid?" The fighter replied..." I have faith in God...if he wanted me dead I will be dead."

The thing that brought me strength was realizing how much I am not in control...and giving that up to God and trusting in God's plan. I am by no means very religious... I was raised catholic but I do not go to church regularly. This has changed with in the past month. I went on a retreat...and that is where I found God and I found peace... I found peace in my mind about the decision. I prayed and prayed that God help me and I always heard I could be strong with God...but I sure didn't not feel strong nor did I really understand what that meant... I think there is a phrase I hope I don't screw it up...but something like...those who trust in the Lord, will find new found strength......I took that to mean that those who trust in God and his will on this earth will find new found strength because God will provide when you need it..... It has not been easy and it still is not easy to follow that but that is what helps me.

I still get scared and I still feel lost at times..but that is when I hit my knees praying... I have for the past 3 weeks now been listening to KLOVE. I think about it mainly when I drive...and there have been twice driving...I started crying and feeling the most lost...and a song came on and spoke to my heart....It was amazing.... I will give the two times...

Once, I was early in my thinking about testing...therefore very lost, scared, and confused.... I was driving and thinking I am not strong enough for this...I can't do this...how the hell am I suppose to be strong..it is too much to bear.... then the song "Strong Enough" came on the radio.Before this I kept thinking you just need to be strong ...just be strong....but this drive home I just broke down thinking I CAN'T BE STRONG I AM TIRED OF BEING STRONG.....I then heard the song....saying "you must think I am strong.....forgive me if I think you are wrong........I am not strong....but then I don't have to be...." I was thinking why...."you are strong enough for the both of us.......maybe that is the point...to get to the point of giving up.".........it spoke straight to my heart.....

Then I went on the retreat and found amazing peace about making my husband making the decision to test...... and I was driving and thinking again.... this time I was thinking I found a little peace...but I feel like I am losing it...I don't want to lose this peace....I got really really emotional driving..... then the song "You never let go" came on the radio.... I and it again spoke to my heart....it says "you never let go thru the calm and thru the storm...oh no you never let go"....

This is my story and what helped me....like I said I was not very very religious... I hardly went to church on Sundays...just raised catholic meaning was baptised and went to church occasionally, and Sunday school when I was younger....I eventually recieved my confirmation..went to college and that is when I hardly went to church and grew apart from God.

My husband has recently expressed he is not sure if he wants to test anymore. It is a big decision but one we need to think about before having kids.....there are many options ahead of us still and taking it one step at a time has helped me to handle it. Any everytime I feel lost or weak... I pray...and I have now been listeing to KLOVE everyday on my way to work for the past 3 weeks. I am also seeking a church I wouldn enjoy attending and being apart of....

I use to have no hope but I have more hope now...this will not be easy....we still have some big decisions ahead but I have faith that God will provide the peace needed at the exact time we needed it...I just need to open my heart to God.

I hope you find peace... I know how it felt to feel sooo lost alone and scared... I felt that same way for a week..when first thinking about the decision....AND it is not even me it is my husband that is at risk.

PS.... sorry it was so long..but one thing I have learned is you don't have to be strong...trust in the Lord.... I know it sounded silly to me and it took a while for me to realize what that really meant.... and maybe it will not help you but I wanted to share what did help me.