The bottom line to all this is that HD sucks, always did and always will. The only time it won't is when it's finally cured. It makes at risk people make questionable decisions and those that test positive, even worse. This disease has fallen through our health care system life net like no other health concern. All the research that goes into diseases that humans inflict themselves with, like smoking, drinking, overeating, a sedementary lifestyle, etc. receives so much attention and financial help. A disease like HD, and the poor soul that developes it,are on their own pretty much. That off my chest, BH910123, testing is a very personal subject that doesn't seem to have a right or wrong for any person. No matter what we think, it's hard unless you put yourself in their shoes. My wife lived through tha ravages of HD in her family for over 30 years. She decided to get tested for my two daughters sake and she was one of the lucky ones, testing negative. She was on an emotional roller coaster for weeks before receiving her results. She still gets nervous about it and this was three years ago. I know of two professional athletes who are at risk for HD. You would think that a pro athlete wouldn't have second thoughts about being tested, or the fears, but both will not test. It's a hard and personal decision that I certainly would never want to make. God Bless you and I hope things work out for the best for you and your family.

Katierae,

After reading your post I feel that I need to respond. I don't think that anyone who is concerned about HD being passed on to the next generation is over reacting. In no way can it be compared to cancer. Hd has a 50/50 chance of being passed on (not so with cancer) and cancer can be cured, not the case with HD. I would find it irresponsible to have kids and just hope for the best. There are ways of having children that would greatly reduce their risk. Nobody is saying that you should give up on your dreams of having a family, but would you really want to look at your babies and wonder if they have hd and when they will develop symptoms? especially when you could prevent it? Just something to think about. I am not trying to upset you. I don't know if you have any children yet, but as a mom of 3 I am terrified! There is not a day that I don't think about it.

They could consider doing non-disclosed PGD to have babies free of the HD gene without the at-risk parent finding out their status. You might consider helping them financially with this option if you're in a position to do so.

www.HDFreeWithPGD.com

Best of luck,
Stacy

That is a great idea. I was trying to explain to my son that , that would be a possibilty if he wanted children, but didn't want to test. Just out of curiosity, how much does something like that cost?

katierae13 Wrote:
"If people knew that their child was going to get cancer, would you expect them to not have a kid? "

This is such an unfair question. People who have cancer do not run the 50/50 risk of their child having the same cancer. My husband is at risk for breast cancer, but it is NOT 50/50 at all and there is treatment and cures for this disease.. NONE for HD. We did not have children togeter..(too OLD lol) But he and his former Phd wife did have 2 ooooopsies. Please do not compare HD with having cancer.

It's all perspective, everything in life is. I UNDERSTAND HD is 50/50, but my point is life as a whole is a risk. Anyone can die tomorrow whether it's HD or not. As a person at risk I do understand what HD is, so please don't try to tell me that I don't. My only point to that was to understand both sides, I think every individual at risk has the right to make the choice that makes the most sense to THEM and I don't feel they should be considered "uneducated" or "selfish" if having kids untested is what they chose to do. You guys are going to go and call me naive, but really I just see this as my one chance to live my life and if when i'm 55 I started showing symptoms that hot damn I lived a great life! I'm 24 and am doing all that I can in case I do have HD, the regiment, the active lifestyle, the research but heaven forbid I stop living MY life for a disease.

Is there a cure for cancer no, can some people get through it...yes. But my point with that statement was to make some people think out of the box a little. If everyone stopped living because of fear, society would be one messed up topic and it wouldn't survive much longer because people would stop having kids all together! And just remember, those of you that are at risk or have been diagnosed...if you're parents had known and decided not to have kids, you wouldn't be here and nor would all the really great memories/life events that you have.

JudyF, the cost of PGD can be around $9000- $18000. It varies greatly depending on the doctor & lab etc fees.

I absolutely understand the desire to not get tested, but I will never understand having children knowing you could be giving them a future with HD.

It is selfish to knowingly pass on the possibility of having HD. Because it isn't just about you and your life anymore, it's the lives of your children that are at risk. I think everyone would like the best future for their child...that's why my biological parents gave me up for adoption instead of trying to raise me as teenagers. I'm sorry if this comes off harsh, I just feel very strongly about kids being given as many advantages as possible...because like you said, life is risky enough as it is.

I am looking to get tested very soon because I am 22 and I want to get married and possibly have children in a few years. I can't do that in good conscience without knowing my genetic status. If I test positive and we remain together, it doesn't mean our future plans are ruined and that my life is over. It just means they're a little different. We may choose PGD, or we may choose to adopt.

...it just makes me heartsick to think that my biological mother had 4 children before being diagnosed. The odds are low that all of us will test negative. And they are living in an HD family too, with their mother deteriorating and at least one of her sisters testing positive. I cannot even imagine the difficulties they will face at such a young age.

Katierae,
I feel like I need to respond to you, because I was probably a lot like you almost 20 years ago . . . my husband, Ray, was diagnosed with HD and I didn't really know anything about it, except that his mom had it and died when Ray was 12. Ray tried to explain a little to me, but I didn't get it, because I never actually saw the disease and what it does to your loved ones. Our son, Joseph, was about two or three when Ray was diagnosed, and I really didn't worry about him too much. NOW, though, I WORRY all the time! We decided to not have anymore children for many reasons, not really solely because of HD . . . money was a big issue for us. In any event, my beautiful Raymond passed away in April of 2011 at the age of 46 from HD. I watched what he went through, and I would not wish that upon anyone. If I had been able to do something to ensure that my son would not have HD, I would have done it in a second now!! Joseph seems fine and is showing no symptoms (he'll be 20 in August), but not a day goes by that I don't worry and feel a little sick to my stomach worrying about his at-risk status. Just thinking that Joseph could suffer like his father did kills me . . . and please don't get me wrong, I love my Raymond so much, and I wouldn't change all the years we had together for anything, but it was a long, difficult road. First, movement/behavior problems, then no working or driving, then slowly the inability to do all things he enjoyed, simple things like walking, bike riding, playing ball with our son, playing video games with our son, pretty much just watching TV all day, then choking and falling constantly, I became quite good at the heimlech manuever, even in the car, at times. He lost the ability to control his toileting and had accidents often; he needed total care, bathing, dressing, brushing teeth, we fed him, held his cigarettes for him; thankfully, he could still laugh and enjoy us (we did have some wonderful times, despite the disease) . . . then his OCD and anxiety worsened to the point that even psychiatric medications and xanax didn't help at all. He'd scream and shake and sweat, and I was helpless to do anything for him, except try to hug him and comfort him with a cool washcloth and sing softly to him to try to calm him down; he was unable to communicate well with others; went from regular food to pureed and then he stopped eating altogether, because he was aspirating; then I watched as he slowly, slowly died. I'm sorry to be so graphic, but this is serious! I know it's everyone's choice, and I don't want to judge, but I beleive that you need all the info before you decide to have children. It is not something to be taken lightly. It will have an impact for many, many more generations and it is heartwrenching. . . my son, of course, is glad to be alive, but I know that he worries about this everyday, too. He watched his precious father suffer so much and he has to worry that that could be him. It's a big, big deal . . . scary, sad and difficult!

I wish all of you the best, for real, but please if you can somehow have children knowing that they won't have the disease, try to do that . . .

I understand the passion everyone has especially caregivers but, this is a free country and people can choose whatever they wish!! The best thing ANY person can do is make INFORMED decisions!! I understand some of you are trying to show the truth of the disease, that is needed, but at the same time u r calling names and judging people you will lose their ear before you EVER get your point across!!
My opinion: Some of you have suggested that someone get pregnant test the baby and if it had HD to kill it??!! Just think can a mother feel ok about killing her baby? this may increase stress for her, it would me. If that was the way people dealt with it, no one with HD would be here, all the loved ones we take care of would't be here, think of life without them!! Makes me sad!! I agree that we should do everything we can to make sure we don't pass HD, however I can't believe the best way to do that is to kill our children.
Melissa

MelissaB,
I totally understand what you're saying, but that's not what I'm saying at all. I'm saying Pre-implantation genetic diagnosis with IVF, I understand that some people may be against that as well, but that's a lot different than what you're saying. . . . but I'm also not judging, I just want people to really know that the decision to have a child is not to be taken lightly. If people have all the information, then at least they're making an informed decision.

I really believe that every HD story is different. My grandfather had HD and lived until his late 70's (him passing was not due to HD), my father who has HD is 53 and shows no symptoms to the naked eye. I am at risk of having it and you're right, maybe I haven't seen it enough to be "scared" enough but with the history I know about my family and HD, I don't feel like I have to stop my life. But no matter what I know about my family history I get upset with this forum because I would still be called "selfish" or "uneducated" just because knowing what I know about my family history of HD, I do still want to have a family. Now if HD had taken over several generations of my family, and I had to see it...yes you are right, I probably wouldn't think twice about having kids--but then again I probably wouldn't be getting married in 10 months because i'd be too afraid to put anyone else through it. This forum is a "pro test" environment, but what about the people that don't want to get tested? Can't their be support for them too? I'm not saying I won't get tested, but right now i'm planning my wedding and don't want to consume the next 10 months of that process with the dreadful steps of getting tested. So yes, right now i'm in the non testing mode...but as I start to think about having kids with my soon to be husband the more I start thinking about saving up the money for me to get tested. And heck, If I have HD...maybe we'll start the adoption process, there are plenty of kids in this world that need a loving home.

Really my challenging of people is because I hate to see people not think out of the box sometimes. Their opinions are not the only opinion, and every HD story is different and I don't think every one at risk or diagnosed can be put in the same file, I really don't. My dad, who has HD doesn't want to see me get tested, he knows me well enough that I will dwell for the very rest of my life and that it'll take all I have to continue living my life normally--and I guess you could say our family works a little differently--but it works for US!

I believe every person especially people who deal with hd in any way. I'm sorry if i hurt anyones feeling, i think right now for me i am dealing with seeing my kids affected by my hd and i hate anything that hurts my kids!!! I just want everyone to understand how painful and hurtful times with hd and kids are!! I love my kids more than life they dont deserve this and i cant change my symptoms. It feels like i am such a failure because i can no longer be the mom i once was, the pain that goes with losing yourself is indescribeable!!
So if i have been so passionate about this its because i am in the heat of this battle and pain. EVERYONE has the right to make their own decisions and i would be supportive any choice u make!!!!! I didnt know about hd b for i had my six kids, so i have never faced that decision, if i could go back and have the decision to do over would i make a different decision? I have no idea what i would have done!!
Just know i do support other peoples choices even if its not the way i might do it!!!
Ya'll have a friend in me, Melissa

It's been a long time since I was on these forums but felt compelled to add my 2 cents worth to these decisions about having children when at risk of HD.

We had 2 beautiful boys before the testing process was available, my husband was at risk & we went for counselling to ask about having children & were told that my husband had a 50% chance of NOT having hd. Why did we act as though he would have it - so away we went & had the 2 boys.

Well my husband as it turned out does have hd, not only that but so did the 2 boys. My first was around 2yrs old when he developed symptoms but nobody seemed to know anything about juvenile hd so he was diagnosed with everything else but hd. He suffered during the 7rs he lived & died in my arms in hospital one afternoon.

My 2nd son started showing signs & was diagnosed at age 9, he too suffered until he died suddenly one morning while at a kids respite house for children with terminal illness & I received the knock on the door to tell me he had gone. He was 11yrs old.

My husband is now in full time care in an hd residential home where he gets excellent care but I miss him like crazy - he's not the man I fell in love with.

You can say "how can you be expected to test in utero & if the baby has hd you are expected to kill it" - well that is going a bit far when you can avoid that by going through IVF or PGD now to have a baby. Having 2 small children with jhd was no fun at all and as much as I love my boys and how happy their lives were when they weren't having seizures, choking, being tube fed & not even getting through primary school, I would definitely go through stages of testing & PGD if I had my time again & it was available. By having children these days without some sort of either testing for the gene beforehand or having PGD etc you are also killing your children with a 50% chance of them inheriting hd.

Just remember my 2 little boys & think what you would prefer, doing it safe or taking a risk and maybe have the rest of your lives to suffer after watching them die before you. I know it sounds harsh but my experience was not pretty but it is real.

Katierae,
Given your family history, I can totally understand why you'd think as you do. I agree that HD follows many different paths for families. I don't feel that everyone should be tested, either. My son is choosing not to test at this time and that is totally his choice. Also, when it comes to him starting to plan a family someday, it will also be his choice and I'll obviously love and support him no matter what, but I will certainly add my two cents. People do not have to be tested to have PGD and IVF, so he and his future wife can do that without finding out his HD status. Please know that if I came across judgmental or angry, I'm sorry. I'm really just trying to protect people from the heartache that could occur. Informed decisions are so very important in all areas of life. Just a side note, even with a family history such as yours, there is always a possibly of an expansion CAG repeat, causing symptoms earlier in later generations, so it's not fool proof that your family will always develop symptoms later in life.

Buddybird,
I'm so sorry for all you've been through. I can't begin to imagine the heartache you and your family have suffered. Wish there was something I could say or do to comfort you.

MelissaB,
I'm sure you're doing the very best you can for your kids. I can say this, our son grew up only knowing his dad sick with HD, but he also grew up always knowing how much his father loved him (more than anything else in this whole world!) Joseph's belief in himself, courage and strength of character are because of the example his father gave him. You have and will always have an impact on your children. It will not be easy, but nothing in life usually is. I'm so sorry for what you're going through, though, too. You did not hurt my feelings in any way, I know that we're all just a little passionate on here. It's good for all of us to express our opinions and speak our minds. Sometimes, I have one opinion going into a discussion and by the end of the discussion, I start to think differently because of some people's responses . . . growth, that's what life is about. We all can speak our mind, but also respect each other's opinions, too. HD is a disease that tests us to our core, the person with HD, as well as the family. I wish you all the best!

My daughter is very angry most of the time. She hates her dad and barely talks to me. She is mad at me for marrying her dad making her at risk. She doesn't care that we knew nothing about the disease. I have a feeling that when she is old enough she will leave and not look back. I hope that I am wrong! I can only imagine how she would have reacted if we had known about HD in the family. My 20 year old son was very depressed after finding out. I decided he needed counseling. Please give it a lot of thought katierae. There is no guarantee that your children would have late onset if they are at risk. My husbands mom was in her 70's and died from something other than HD. My husband was diagnosed at 41 and was symptomatic.

Buddybird,
I am so sorry for what you have been through. Nobody should have to lose their children. I pray that I will never have to experience something like that.

Judy,
I am so sorry for your children's reaction!! I hope your daughter will come to her senses!!!
It is true about never knowing when age of onset will be!! My grandma dies at 83 with HD, my mom is 61 and she has less symptoms than I do at age 41. I don't kmow what my grandma's CAG is or my mom, mine is 40- That would predict a late onset, but I have been having the softer symptoms since2001-2002, and now since about 2 yrs ago I have had some twitching and stumbling, shaking...
Just reality in my family,
Melissa

Thanks Melissa! i also hope that she changes her attitude. She is literally taking all the joy out of having a daughter. Her actions have made me wonder at times if she has jhd. As far as I know she acts fine at school and with her friends. I think that she is just really scared and I can't blame her. I'm hoping that someday soon we can talk about it. She found out what it meant to have hd in biology class, which is unfortunate. She refused to talk about it . she would always tune me out, so instead found out in a difficult way.

Katierae: I am in the nontesting mode either. Since there is no cure at this moment I feel strongly that it is not good for me at the moment. I want to live in the moment and enjoy my life so a lifethreatening disease hanging above my head won't be adding to this! My mother is 74 now and, with a CAG count of 40, has very mild symptoms. I have two sons (15 and 17) and we are at risk. I can't imagine what I had done knowing that we have HD in the family when I was planning for a family though.

In summary, we all see HD differently and we all make different decisions. That is life.

Some people get tested, some don't. Some get tested young, others when they are older. Some people have children at risk, others are determined not to. Some children may be annoyed their parents had them at risk, others will be understanding of the situation their parents found themselves in. Some people will cope, some won't. Is there a right or wrong decision? Not really. Just different lives playing out in different ways.

I'm 23, tested positive at 19, and living a very happy life. I made the decisions I wanted to make with my life and they have worked for me. Another 19-yr old may have a very different experience of testing positive. The point is we are all different and we are all shaped by different environments which impact on us in different ways. There is no right or wrong path to take, there is just your path.

Matt

PS. Judy - think your kids would get anything from checking out HDYO? www.hdyo.org Something your kids could explore on their own or with you if they wished. HDYO has been a big success and hit with young people since launching in Feb.

[www.hdyo.org]