People suffer with a multitude of thiings every day.You all have opinions, and I certainly have mine. Children and adults suffer from a multitude of things every day. And yes, jhd and hd is an illness along with many others. Do you think people with HD suffer more than others inflicted with other illnesses? If a person is an adult, and at risk. And choose not to test, it is THEIR choice, not any of yours. If they want children, so be it. They are free to live their lives any way they choose. It is not for any of you on here to tell someone what is right or wrong. When I was pregnant with my son. I found out about hd and when I told my doctor, he gave me the option of terminating the pregnancy. My answer was no way! If I had to do it all over again, knowing earlier the risk involved, I WOULD DO IT AGAIN, and I would care less on what people like all of you here even thought about it. You all had kids and now have consequences, so don't sit and judge someone else on what they want to do!
My oldest is at risk, and no guessing here, he knows the risks, and the consequences the same as others at risk, and if he decides to get married or some day have children. Good for him. He has my blessing, will I care what any of you think? NOT,
Marsha, I have been in a nurse for 26 years, I have seen things you could not even imagine, You need to wake up! Children and adults have worse things going on then Hd. i

Charming. You must make such a compassionate nurse. Do you treat your patients the way you're treating people here?

Sure do! Maybe you will be fortunate enough be my patient some day.

Anyway, I believe that cbreeze is entitled to her opinion that no one else is entitled to their opinions.

But as always, I reserve the right to ignore her opinion as she reserves the right to ignore ours.

Thank you Steve.

It is always the individual/couples choice as to what they do regarding having children at risk or not. Sure, decisions people make impact on others, particularly other family members as Marsha pointed out. But that doesn't make it their decision, the final decision should always remain with the individual. All we can do is provide people with the facts around having children and the options available to them, and let them make their own minds up. Marsha, despite all your encouragement, if your daughter decided to go down a different route when having children, what would you do?

Let's put things into perspective here too. When we talk about having children at risk or 'HD free' let's remember it is hardly ever such an simple choice. If it was simple I think almost everybody would opt for the HD free route. Having children 'HD free' is hardly ever an easy road, it takes a lot of commitment, determination, patience, strength, support and sometimes money too. PGD has what, a 30% success rate (?) and can be an emotional rollercoaster of a journey. PGD can also be expensive and as somebody else pointed out, it is sometimes forbidden by various religions. Other people don't want to have an abortion so prenatal may be out of the question. Many people don't want to adopt, they want their own baby, which would rule adopting/fostering out. The same can be said for egg/sperm donation too. So it is not as easy as saying 'I'm going to have children HD free', it can be hard work and even people with the best of intentions can end up out of options.

So what are these people meant to do? Not have kids? What if they desperately want children? Sometimes decisions are not so simple.

Personally, I intend not to have children at risk. I see the risk of JHD for my children as being too strong to ignore for me as a young male who has tested positive, so I won't have children at risk. But I will look at other options for having children and I very much want to have children. That's my view, but that doesn't mean I disagree with anyone else's stance.

I feel we must be understanding of people's situations and their decisions. When we discuss these topics people naturally want to get their points across because we want to influence others decisions on this topic, and that is ok. But do so in an understanding and accepting manner, rather than being confrontational with each other all the time. Because people are always going to make their own decisions in the end and people will likely continue to make different decisions than yourselves. So we can either create a supportive environment where people can make their decisions, feel supported, and come back for support when necessary. Or we can create an unsupportive environment where we force our opinions on each other and people feel unable to access this space for support in the future because they feel marginalized by the decisions they made.

Matt

[www.hdyo.org]

I find myself totally unable to disagree with Matt - how frustrating. To answer Matt's question to Marsha we would, of course, continue to love and care for her as well as any children. How confrontational of you to ask. Even though we disagree with cbreeze about the rights of others to share their opinions our hearts go out to her for the struggles she goes through. She's part of our HD cyber-family that we work hard for.

I might have missed something here, but the argument discussed on this thread was not whether or not a person had the right to decide for themselves, but whether or not those impacted by the decision have a right to share their opinion before the decision is made.

After the decision is made then it's rather stupid to hold a bad decision over someone's head (and I really dislike that behavior in people).

Now, on this board we are all about opinions so people should just be prepared to hear those opinions and try their best not to take it personally - because except for those posts that name names - they are not about you - they are all about the poster.

You have some really good points Matt and I agree with some of what you said. I would just point out that your statement about how much of a struggle it may be to have an HD free baby, both emotionally and financially is for the most part temporary as opposed to the years of emotional and financial struggles people have when HD is in the picture. I personally would rather face those things temporarily instead of worrying every day that my child is HD positive, which to me is far worse. I just think that other avenues should be considered first. Unfortunately, none of us is able to decide if we would want to be born at risk. We have to hope that our parents made the best decision. If I was born with a fatal disease and knew that my parents could have avoided it, I would be very angry. But that's just me.

Sure Judy, the possibly difficult road of having children HD free has a fantastic prize at the end of it if everything goes well. But it doesn't mean HD is out of the equation. Most people seeking a HD free child will either be at risk or tested positive themselves, so HD will likely still impact on life. But of course, the more people in the family without HD the better.

I am one of those people you speak of Judy. My granddad kept HD a secret and as a result my parents had no idea that there was any risk when they had me. When I found this out I was annoyed with my granddad, but after I'd thought things through I began to understand his reasoning for keeping it quiet and I forgave him, despite still disagreeing with his approach. He's passed away now but I loved him very much and he was an extremely kind man. I don't blame him for anything and I've accepted HD as a part of life. But as you say, these are our personal opinions and there will no doubt be different reactions to finding out such news. I think this is more of a modern issue, as in the past there was no other option with regards to having children. So perhaps we will see soon how young people react to finding out their parents conceived them knowing that there was a risk and that other options were available. I still feel there will be a mixed bag of reactions to that though.

Matt

[www.hdyo.org]

My husband has HD and we had no idea it was in the family because after his parent's divorce he migrated to the United States and never saw his father again. Would we have had children knowing then what we know now? Hmmmmm. That I don't know. What I do know is the joy and fulfillment our two kids have brought into our lives. We had so much fun raising them and even as adults they continue to amaze us with their kindness and intelligence. Although HD is a devastating illness, and dealing with my husbands dementia can be exhausing, I remind myself that it has also impacted our family in a positive way too. It brought us closer together, brought us back to the church and renewed our faith in God. Through Him, we get our strength to live life to the fullest and enjoy the moments when my husband is agreeable and He helps us forgive and forget the moments when my husband is angry and abusive. My daughter chose a path of missionary work and will be working at with university students at a Catholic Newman Center, evangelizing and mentoring young adults to remain faithful to the values and morals they were raised with. If she just impacted one person and brought them closer to God and their faith, it would be worth it. Neither of my kids have been tested and at this point they are not planning to. Maybe they will someday if they marry and decide to have kids. I remind them that we are here for a reason, to impact the lives of others around us in a positive way, for as long as possible. My family has a high incidence of heart disease, ovarian cancer, and brain cancer. It's entirely possible that my kids could die from that before Huntington's.
Don't get me wrong, life is not a picnic, and there are some days that are horrible, like the time my husband tackled my son to the ground and bit him. That was scary and very upsetting and at the time it was hard to separate the man from the disease. Later in the evening, the kids and I were able to talk about it, laugh a little, and come up with an action plan on how to handle that behavior in the future (grab the car keys and go). What if my kids develop this disease? It would be devastating, but we would get through it, just taking one day at a time. So I ask myself again, would we have had children knowing then what we know now? Absolutely!!! The moments of happiness greatly outweigh the moments of sadness and stress. I live for today and focus on the positives and things I can change that are in my control.

Well said djcloc! I'm grateful for people like you on this forum that can see things from different perspectives. Life is entirely too short to give up on all the wonderful things. Thank you for posting, some days it's hard for me to stay on this forum because I'm not supported by wanting a family while being at risk for HD.

Katie,

Why are you against having an HD free child? Nobody ever said that you have to give up your dream of having a family.

Judy,
I'm really sorry that you do not have the ability to think outside of your opinion. I respect your opinion and that may be what is right for YOU, but you are not a part of my family and don't know what is best for US!

My bother wa diagnosed with Juvunil Hd and at that time did not know is it was who had passed this heritery medical: father or my mother. So my mother had the negativve test, whch confirmed is was my father who had it and passed in onto his first son. He has had only three kids and the one older than me by three years, I decided to get thetest. I was only 22 and just finsihed University was engaged to me married, So all the naggig doubts to the the front and I had the test taked. in the time it took for me to be tested, I was told by a onsite cunslller there to make a will and get life insrance, before the results were iven to me a few months laet i honestl as a 22 yers old understnd what she was saying. When my reults came back posite, same insite couceller told me that this was life chaging. It literaaly took 10 years to relaise her words were true. In those 10 yers I have had to walk away totally from mt carreer, my maariage and then friedns, I tend to look back on the lise efre I was dignosed as a different lve. When i was dianosed 17 yers ago, there was no support at all. You were dianosed here and let to it. we now have a full stem aaroung the illness, like Counslats and pallentive care. The major gaop here in northen ireland is there is no specialt respit/inpatients here.

Matt-
I agree with what you say and "djcloc" I agree with your take on life.
I also realize we all have different opinions but should not belittle those who have different ones from us.
I many times wish we could ask God our questions - we may be surprised on the answers we get.
We all have alot of questions to ask one of these days.

Just FYI, the success rate for IVF (PGD) can typically be about 30% per embryo transferred. Usually 2 or 3 (sometimes more) are transferred in one cycle. So the typical success rate per cycle would naturally be a lot higher, 60-90% or more, depending on the number of embryos transferred. But this number would vary depending on how many embryos are considered healthy after testing for HD. For example, in my one cycle I had 9 embryos: 5 had HD, 1 was unusable and 3 were healthy & transferred.

Katie, Having a family is in fact wonderful! I love being a mommy. And it's even better that I don't have to worry about my sweet, precious little ones having this very terrible disease. I can't imagine how guilty I would feel if I had put them at risk, knowing that there was a way to protect them. And, I can't imagine in 20 years having them come up to me and asking "why didn't you protect me?".. Yikes.

Cbreeze - you say the future (MIL) should mind her own business, but fail to see it IS her business. Who will help her son should his wife develop (according to her she is already showing) signs of HD? SHE WILL. Who will need to help with the upbringing of her future grandchild should there be one plus the 2 that are not even related to her biologically & go through the same issues of testing with them when they reach 18? SHE WILL.

The future DIL doesn't have a mother to help because she passed away from HD. So the future MIL will have to take the whole kit and kaboodle to the detriment of her own family to take care of her son's family & maybe her future DIL when it could have been avoided.

I'm not saying testing should be done, of course that is the choice of the future DIL. However to have more children at risk when it can be avoided through PGD/IVF is somewhat disturbing.

Having accidents, falling ill are things that we all face in life & to an extent some can be avoided. You may see someone come in after a car accident who ends up in hospital a long time, is paralyzed for life & has to rebuild that life & think how much worse that is than HD. Yet it can sometimes be avoided by sensible driving etc. HD can't be avoided & is such a big risk to take these days with the amount of information available - it is a choice not made by yourself for yourself but a choice made by yourself for future generations.

Of course nobody would give up their wonderful time with their children and raising them. And caring for a spouse thru the years can be very much a blessing.
However when HD is in your life day and night for over forty years, with your spouse and children and grandchildren and maybe even great grandchildren you have to be realistic, HD becomes your normal.
You might have had the ability to stop that if you made some different decisions early on. Just something to think about, not a judgement.

My older sister chose not to test, knew she was at risk since the mid 90's and went on to have a child in 2004 at 43.
She is now in full-time care and her eight year old lives with his father.
I have been picking him up for visits every three to four months for the past year and a half.
He is here now and this will be his first visit with his mom in care.
The night before last I picked him up we were talking before bed and he started talking about his twitches, ( I had noticed some eye rolling
and the odd shoulder shrug on previous visits) he explained that he had so much energy that he sometimes twitched,
and while sleeping his foot pressed against my leg and he twitched about five times in a row, like an involuntary movement.
I'm freaked out.
I'm hoping it's Tourette's or something like that.
This child that she wanted so badly, she now has no consideration for and can't be alone with him because of inappropiate things she says.
I keep telling myself, this is his father's problem...right.... but know that's not the reality of things.
Yes, she had every right to make the choices that she did, but she chose for him and for us.
I never realized the whole " family disease" until face with caring for sis.
I feel overwhelmed with the possibility that this could be JHD, I can't take on anymore but don't know how to back away from it.
Am working at staying chipper but have been in a funk about it.

Colleen, I know you must truly be just sick at heart for this possibility, but I pray that your nephew is just full of energy. This disease does affect so many people, and once you're in it, you're in it for keeps. What does his dad think? You know the only way to know is to test, how does he feel about that?
We need a cure!

Take care,

Carla