Living with Juvenile Huntington's Disease 

That's so sweet, they dont want any kid to suffer and they adopted

I’m adopted as well. Adoption is a wonderful thing, but I do suggest getting genetic testing done yourself, as I did end up getting diagnosed about ten years ago with a genetic condition, and it was not a pleasant surprise.

@@mook_butt8037 what condition, if you dont mind me asking

❤️

Soil, plants and people are deficient in nutrients, hmm could this cause problems in the body? This is the 2020 health revolution solution!: d.tube/v/paywithlawv/j1hc70kwizj

Sometimes they have kids without being aware they have the gene or their spouse has it. So I don’t think they’re doing it “purposefully”.

@@vanessasolis3119 yes, but the one couple in the video knew the risks

RWM1889 ya same

@@vanessasolis3119 I make no judgments what so ever. I have HD in my family. Have lost Grandfather, Mom, sister... I am in many support and societal groups for Huntington's disease. Huntington's has this negative stigma that tends to make individuals and families keep it hidden in the closet. Some are open, some lie, some are kept in the dark mostly due to denial or fear. I know many who were not told by spouse that HD was in family. I know some that were not told by parents that the illness was hereditary. And yes there ARE many who choose to have children, knowing, hoping that by the time it may affect their child there will be a cure. Of course with today's technology one who has any interest needs only to Google to find out the truth about Huntington's disease. And of course there is Juvenile HD. I know a few as with the couple in this video who were fully aware about HD and chose to have children thinking a cure would be available by the time their child was an adult, only to sadly find out that their child has JHD.

@@punknhead23 I hope things change and families won't hide the truth from other members or spouses won't hide that they have it in their families. I hope you won't take it to yourself but I believe that the only ethical thing in this situation is to not have children of your own.

Both? That’s absolutely insane. Do you have an email?

My mother and her 2 brothers have HD

I'm so sorry. Time with loving parents is always too short; mine were each close to 90 when they died and I would have loved still more time. I can't imagine losing them when I was young

@@mariajared9414 don't give people false hope. Nobody has ever cured from HD. It's impossible with abracadabra shit.

Kirsty hoey 🙏

keriezy if u want kids, u could get genetic testing to see if your a carrier. I dont know a lot about it but pretty sure its a dominant gene so if neither of your parents has it you wouldn’t have it and couldn’t pass it on. for your kids to have it the father would need to have it and pass it on

Hey cuz! Nice to see you here. Unfortunately, your aunt (my mom) did test positive for HD which means I'm at risk. Grammy was still alive when I became pregnant with Kinsi so I wasn't thinking about HD at the time. I'm looking into having embryos tested and saved for later if I decide to have more kids in the future. I don't want to get tested yet.

keriezy all you have to do is get yourself tested. If your not a carrier then you pose a 0% risk of passing it down to your kids. It doesn’t matter how many people in your family have it or test positive for the gene. If you test negative for it you’re in the clear.

I don't know how it works in the US, but in my country, whether you get tested or not, you have access to methods that prevent Huntington from being passed on to your descendants through pre-implantation genetic diagnosis.

My mum has HD. If your dad don't have HD, you don't have it. I can't explain Well in english but i am sure. You can talk to a doctor and you will understand why. The HD can't "jump" in the family. It's from your mother or father only. It's 50% of propability. Bonne continuation

You're a wonderful mother, never regret your selflessness, that's what being a mother is all about. I hope you bare well ❤

You're very wise, open mindeded, and articulate. My mom is referred a mother figure to many people not related to her, she is always spreading love to others! I think you may be the same way. I also choose not to have kids due to a potential heritable health condition. I really hope the very best for you! Spread your wisdom and love to others. Take care! Hugs.

What are the odds of passing it down to your children? Based on these comments it almost sounds like 100% :o

Rachel El the chances of inheriting the gene for hd is 50/50

Rachel El it depends on the parents and their genotype but typically 50/50 however as Huntington’s disease happened when the dominant gene is present it’s is of a higher risk

@@rachelel9087 its 50/50

@Chana Bayla my parents did genetic testing with me and did ivf where you can tell before implantation if you get it or not.

100% agree. If genetic counseling weren't so expensive, I'd suggest everyone to do it.

if you can't afford genetic testing....don't take the risk...don't have children

Yes absolutely Leo, there is a huge stigma still, the same as there was for cancer a generation or two ago. Lots of people don't want to or don't know how to talk about HD with their family. It's improving as more support is available and research progresses, but there's a lot of work to be done on this front.

We are on the shoulders of giants guys. Please consider what this Dr has been working on in his career: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-utyfgjKwzXY.html 👨‍⚕️😷🩺

I have MD n I agree.my brother not to have kids..he's 48 now no kid never married,me on the other hand I'm 44 3 kids well 2 adults 1 17..my oldest n youngest tested positive.but as carriers,if you like to Kno more about my condition please come visit I could use some support 🙏😢 I'm trying to stay positive but it's very hard but the support n kind words really help me,a few years ago I hated being photographed especially video taped..took me 30 years to be ok on camara,iv accepted this,n I Kno in my heart God has a plan for me,I always thought I was worthless but noone is🙏I'm so tired,but mentally I'm ok after my depression n my ex abusive relationship, which caused me to get anxiety. I decided my kids suffer watching me, I got a channel n it really makes me feel better.hope you guys stop by watch hopefully like comment I would loveto hear from you guys,im trying to stay positive in hopes I can somehow b a blessing to others🙏 I'm just under my name.yanet Cortez thank you I could use some support 😘

@@yanetcortez3789 I thought HD is autosomal dominant, which means that you either have it or don't so the onset of it depends on the gene itself. I pray that is that your youngest one doesn't have signs/symptoms of HD.

Hello Hi oh i don’t know I will look up the difference between HD and MD I was diagnosed at 9 with muscular dystrophy I’m in a wheelchair chair now at 44 I’m not feeling great but I do have ok days but can’t b sitting for long either so pretty frustrating m, I will look into that thank you did I invite you to my channel? If not I’m on RU-vid as Yanet Cortez and my instagram is Yanet. Cortes.5

why don't you just get genetic testing? if you don't have the gene you can't pass it on

I'm so sorry.

My love to you and your family. I am so sorry.

I’m so sorry, keeping your cousin and families in my prayers

How terribly sad! 😖😖😖

I am so sorry. Praying for a cure.

mike adler I'm so sorry to hear this! I wish you all the very best

thank u so much!

don't hesitate to reach out to us Mike

So sad :( It's horrible how this disease it when it's passed down several generations: the mutation just gets worse and worse, with earlier onset for each generation :(

Your mom is destroyed in a different way. Hope all of you are able to be strong.

That is a very selfless and responsible decision. I'm sure it was difficult to make. I hope they find answers for future treatments and give hope to those with HD.

Please share this clip with your teachers wife: this Dr's message has been for 50 years : d.tube/v/paywithlawv/j1hc70kwizj

God bless you sweetie, you're an angel for taking care of your mum. you've got the weight of the world on your shoulders,when you should be able to just be a kid!! God loves you and so do I!!😘

You’re so incredibly strong, sending you strength and love

Lisa! Thank you for your comment! You are strong because you have to be! I love you for that. And your love for your mum is strong. Keep reaching out and get support.

You’re such a strong young woman

Keep going, little lady... I write to you tearfully when I say that you are already accomplishing so much. So much more than the average person. The average adult.

By the Grace of God go you. ❤️✝️

How did it turn out, buddy?

And???

Tell us please

@@TJ-ik9on haha lol

hope you're doing alright little amogus guy

Martin Jensen : I have bo idea how people can decide to hav e children with HD running in the family.Today,when you have acces to all information on the net and in the books.....Why???

Sometimes they know, but sometimes they don't - estrangements in the family, early deaths of other causes, misdiagnoses can all mean someone doesn't know it's in the family until after they've had a child. Some do know and take the risk, but not always.

Yeah....I just dont get it.......

You know, I get what your saying but at the same time, everyone faces risks with having kids. My family had NO history of disease or sick babies, and my son ended up catching an infectious disease at birth called NEC which led to him losing ALL intestines and ability to absorb any food. This is also a life threatening disease that there is no cure for, and I never knew until it hit. You make the best choices with what you are given and you make the most of it. We love these babies, sick or healthy. They make us who we are and teach us to be better in so many ways.

Hi Martin, some do have children knowing the risk, but many don't actually know that HD is in the family when they have children. It's only later that HD surfaces somewhere in the family and by then it is too late. Sometimes HD just starts from out of the blue, no family history. There are ways of having children without the risk of HD but they are not always accessible to everyone and can be very expensive, adoption is not even an option in the UK where I am as social workers won't let HD families adopt. Many just want to live normal lives, forget about the risk and have children. Many feel that is there only choice and that there is no other route. This is not the case of course, we are moving away from HD being a no hope disease to one which has hope for treatments and options for having children without HD. Even with the information on the internet people have to find or be shown it. It's easy to say they had children knowing the risk, simple as that. But it's rarely ever that simple when it comes to HD families and if you spend some time with each family you quickly realise this point and making any judgement becomes pointless. You have to also remember that people in general, usually, have a desire to have children. It's natural. So to suddenly go from a natural feeling of wanting children to saying, no I'm not going to have any children, is not easy for anybody. This, as well as most people have some sort of condition in their genes that they can pass on to their children. Should we all not have children to be on the safe side? Just a few comments for you to think about. Matt

They knew some of it, not all. Just to clarify the mother's partners in the video are step dads, the fathers were all sick with HD at this stage. But go back to the time these couples were having children they knew very little about the risk of HD in the family, especially the mothers who were all coming into the HD family of their partner. Even if they knew some in their partner's family had HD and that there was a risk to their partner of 50% (which they may not have even known), their partner was healthy when they had children, no signs of HD until later on. So when they had children the risk was 25% for the children, but when the father was diagnosed with HD that risk went up to 50% and then these families were incredibly unlucky to have children who got HD very early in life (JHD) which only happens to 10% of HD cases globally. So yes there was some risk but they wouldn't have ever been able to predict would happen back when they had children.

@@HDYOFeed any percent of risk was too much.

A lot don't know they have HD when they have children or even that it is in the family. And also, adoption is not always an option for people with HD as services deny them on grounds that they could develop HD later in life.

Seriously. People act like they are entitled to a child. You are not entitled to anything. How about not having children at all, you can always do charity work involving children, etc.

Is it not human nature to want to have children? It is built into the core of our DNA. It's not entitlement, far from it. Do you have children?

Of course they have the right to give their children a crippling and devastating life-long disease by a 50% chance. I mean, who wouldn't do that?

None of these families wanted their child to get Juvenile HD or HD. Did you miss my first reply to this post or just ignore it? Some of these families didn't know HD was in the family at the time that they had children. Those that did know HD was in the family didn't know that they had HD, only that they themselves had a 50% risk. So any children they had at that time would have been 25% risk for adult onset HD. The odds of them actually getting Juvenile HD is extremely rare and low, most of these families wouldn't have even known Juvenile HD was a thing. Lily, do you have children? You tell me what the difference is between having children knowing the genetic conditions you could be passing on and having children not knowing? Some how because a person doesn't know their genetic risks it is ok to have children? But someone who has a risk of HD should never have children in your eyes? Yet everyone passes down genetic risks to their children and I assume you're fine with that so long as they do so blindly. As long as you're not aware of the risks then fabulous, continue having children? But if you know there's a risk of something then somehow you are seen as a terrible person for wanting to have children.

I have to agree. I wouldn't bring a life into the world knowing they will suffer because of a genetic disease. It is cruel, and selfish, life is hard enough with all our limbs and and senses working correctly, let alone when they don't.

Well said

Coconut ScienceGirl92 raise awareness for the disease! You can probably look on this charity's website for fundraising events. And feed them icecream

Such sweet, beautiful brave children who have touched many lives... including mine. Bless them and their families! I wish them as much joy and fun (and ice cream 😊) as possible

You could check on: Soil, plants and people being highly deficient in nutrients, could this cause problems in the body?: listen to what this Dr's message has been for 50 years : d.tube/v/paywithlawv/j1hc70kwizj

Hi Autumn, your reply is quite common from an outside perspective to put 'blame' on the family for having children. From my perspective as a HD family member and having worked with HD families for many years, it's not that simple. Often families don't even know HD is in their family when they have children and HD can start out of the blue as well. But dealing with the specific scenarios of these families in the video, they knew the risk of HD but they didn't know about Juvenile HD. They didn't know that HD could happen at any age, including as children, they thought it was an adult condition. They thought that if their child had HD they would get it in their 40s, 50s or 60s and the child will have lived a long life by then and perhaps research will have progressed and HD is not fatal anymore. These are the thoughts they have. They have these thoughts because Juvenile HD is not talked about, is not taught or mentioned by professionals and organizations in the HD community. When people talk about HD they always do so as an adult condition and this means people are being educated wrong about HD and the risk for children. These families weren't educated but that actually wasn't their fault, in general our community is failing, still, to educate loud enough that HD can happen at any age. So for me I never see any blame for families as it's not their fault they weren't told that HD can impact children, I just see inspiration in the way they cope and adapt to the situation they are in. Hope this helps. Matt.

HDYO That's still selfish, I'm sorry. So it's fine if your child descends into severe disability as long as they're an adult? Absolutely cruel. I agree that at this point there's no reason to continue to blame the families since they're already dealing with the consequences. To the families that didn't know, that's awful and I'm sure it came as a devastating shock.

Such a selfish uneducated comment

Hi Random, that's your opinion and that's fine. It's a very divisive issue within the HD community. There are many who would agree with your comment and there are many who wouldn't. Personally, having watched my dad die of HD, I know I don't want children at risk of HD. However, I don't view others who have children at risk as selfish. There's more to it than that usually. I just see a lot of good people who want to have a family. How many people long for that? Comments that people shouldn't have children if they have a genetic condition, well that would be ideal but it's not realistic to expect people to stop having children. It's human nature to have children and when you take a large group of the population (those at risk of some sort of genetic condition) you are always going to find that the majority continue having children. I do not view these people as selfish because usually they aren't selfish at all, they're being very human. Matt

Autumn leavitt that would mean everyone shouldn't have kids and populate the world then. If it wouldn't be the one disease it would be something else. With technology now it's a little easier but still people does deserve to have the family they always wanted no matter how short the time will be.

Are they alive by now?

@@irebernardi the youngest one died, and the middle one isn’t doing well. The oldest is struggling but still has awhile.

My friend's brother had HD, as did his mother and two other siblings. His brother (with HD) was arrested for being drunk when he wasn't.

Suppose you had a gene that somebody thought shouldn't be passed on? Who decides whose life is worth living?

kk doc this is just hateful and stupid why do people who can't afford children have children cuz they have the right too, oh that's right, everyone has the right too without anyone shoving their nose in it. it's not your business and they have the right and they're beautiful children would I make that choice no would you make a choice apparently not but stop judging people it's not helpful and they have the right to experience life as much as they can before they are off this planet and if that's one of their life experiences they must have to be happy it's not your business.

Ashley Burbank You are watching the devastation caused by a horrible disease that strikes people in their prime making them turn into a ghost of what they could have been, and you are saying “Go for it! “. Why in the world would you want to do that to another human being!?? Especially when it is 100% preventable? You are the stupid ,hateful one.

@@ashleyburbank3129 i wish i could super downvote this

Please, don't. I was adopted into a family with Huntington's it was awful and painful to deal with. Many adopted children have enough trauma to deal with don't add to it. Don't have children period. It is selfish to have children in any shape or form knowing that this illness will exisit in some shape or form in their lives. No reason to make any child watch a loved one die from it and their nothing they can do.

@@ashleyburbank3129 You are pretty selfish to bring a child into this world knowing what can lay ahead. Also, try to learn some basic English.

I'm so sorry

@@masteryola1154 If you had it, you still do.

It struck me the wrong way, too. Choosing to ignore their child’s condition often does more harm than good. Listen to the podcasts from Sickboy, Eye-opening stuff. Though it made me upset when he found out he had cystic fibrosis by snooping through his parent’s stuff. His whole life his parents played ignorant to his chronic illness. They only found out their son already knew when he was teenager from a teacher’s phone call saying that they have an urgent matter. The typical high school essay prompt “Where do you see yourself in the future?” was answered with something like “Nothing, because I’m already dying anyways.” He went his whole youth depressed and suicidal because he had CF, and he had no proper support. Outright denying what’s obviously in front of someone makes people go mad, and once they finally get some recognition they respond “I thought I was going crazy/insane.” This could’ve been easily avoided if his parents just faced the fact that their son had CF. So much avoidable psychological trauma. Now switch CF with HD. Same traumatic story, different disease.

it takes a very brave person to decide that it " stops with me" . without testing...I salute you for your very difficult choice

I don’t understand the mentioning of women as passing it on? It was not intentional and so I’m not sure what it adds to this particular conversation.

Unfortunately so far there's no cure

HD is primarily an adult onset condition, only around 10% get Juvenile HD, so it's not magical thinking to think their children won't get symptoms young.

You make it sound like their lives don't matter. I think they would disagree.

Alison Lekarev He/She's not saying their lives don't matter. The person means to say that knowing you have HD and still having children even though you have the right to not only affects yourself and your children but society too because until a cure for HD is found, the more people with HD the more it becomes a burden on society. It's sad because people do want to have children but there's no other choice until now than not to have any children at all.

I think unless you yourself suffer from this disease that you don't have the right to comment that.

- - no of course you can. My underlying point was that these people should not be judged harshly for having kids. You don't know where their situations were. The last thing any parent wants is so see their child suffer.

- - I'm not sure it's thats black and white. This isn't something I have and I'll agree that if it was me, I probably wouldn't have kids. But I don't think it's fair to label others as monsters. I'm sure they have a justified reason for it? 🤔 I dunno. I just don't wanna judge.

Should people with cancer stop having kids too??

that is so sad! i'm so sorry to hear that!!!

WHEN WILL YOU EVER KNOW AND UNDERSTAND THAT SOME OF THESE FAMILIES DONT EVEN KNOW THAT THEIR CHILDREN WOULD HAVE THE RISK TO SUFFER THIS DISEASE! gee stop talking like you're professionals and humble people, y'all are just ignorant. leave right now.

@@SpyderT22 Are you saying that EVERYONE should get tested for HD before having children? My husbands father had no clue he had family with HD. He was kept from his mother that carried the disease and told she was a whore and contracted syphilis. This was in the 70s. When he met my mother in law he seemed perfectly healthy. They had 3 children. Years later he began showing signs. It wasnt until the mid 90s they even had a diagnosis for him. They didnt test pregnant women for HD even then. Please explain your comment.

millereo83 that’s a great point

@@millereo83 no, I think she meant only those, who have it in their families. Nobody is blaming those parents, who have no knowledge of HD running in their families before they had children.

jaye simond I think assholes like you shouldn't be allowed to have children cuz then they'll take on these seem terrible ideas how did that feel being told you have no right to have children it feels bad doesn't it don't tell people that you have a problem. seriously you want to leave nasty comments like this to nice families like that it's not your business

Ashley Burbank Actually it is everybody’s business. It’s a forum for people to voice their personal opinions, which may be strong over emotionally-charged topics. That’s the beauty of this country, everyone is entitled to one, even u ;)

jaye simond I guess your right even mean spirited people who didn't understand what their mom meant when they said if you don't have anything nice to say don't say it, get an opinion. unfortunately the point of this video is to bring awareness not for people to crap all over it and people who have that condition

The vast majority of ppl share similar views as mine. So if u can’t tolerate ppl with opinions different than urs, leave this thread ;)

jaye simond wow that's great you even know it's about awareness and you don't care you're a great person. way to bring light to the information that really needs to be brought light to I hope someone finds chance to crap all over your life choices I really do because that's what you deserve

God bless you afrin b. Good luck with your research and Graduate Studies. From Philadelphia, USA

It is a recessive gene, so takes one from Dad and Mom to have disease. If someone in their families hasn't had it, they wouldn't know they were carriers, and it doesn't usually show up in children.

Queen Bee- Thank you for this info. I don't have this in my family, but I feel like before having children I'd get tested for things like this. I wonder if you know if there is a way to have this "abnormality" (don't know what the right word is there) taken out, like before insemination? For example, there is an awful genetic disease called Fatal Familial Insomnia & I watched a documentary on that & a woman (who has it) & her husband found a way to get that gene removed before conception, you know like in a laboratory, & now the daughter doesn't have it. Do you know if that's possible with this disease?

Ps; I'd google it but I had trouble explaining the process here so I don't know what I'd search for..? Sorry

It’s not possible to screen for everything por to become pregnant. There are millions of possible conditions, it just doesn’t work that way. All you can do is get a very thorough family medical history on both your side of the family and the father of th baby. Don’t smoke, don’t drink, take care of yourself, is all you can do.

@@ladiejane8684 It's possible to have embryos made and genetically tested. The one's that test positive for whatever disease you're worried about would be destroyed or could be donated to science. The ones that test normal can be transferred into the mother/surrogate.

Exactly what one of my friends did since she has cerebral palsy.

why say this? seriously.....modern medicine is there only hope....

Patrick TheBaptist The 'Lord Jesus' should have prevented this.

Maybe He should have just "prevented" you.....

PatricktheSalvageGuy So you are ok with kids being born with horrible illnesses?

Patrick TheBaptist Amen, stay strong in your faith brother in Christ. There are a lot of doubters in these comments, don't be discouraged.

through dr idume I got cured using his herbal medicine and now I'm better and normal, thanks to him👇👇👇 ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-DahqD2Ijn_4.html

David Law aww 😭 don’t worry they’re in heaven now ❤️❤️

I’m so sorry❤️

Sorry to hear that 💙

so sorry to hear that . may they rest in perfect peace.

@@SpyderT22 They knew some of it, not all. Just to clarify the mother's partners in the video are step dads, the fathers were all sick with HD at this stage. But go back to the time these couples were having children they knew very little about the risk of HD in the family, especially the mothers who were all coming into the HD family of their partner. Even if they knew some in their partner's family had HD and that there was a risk to their partner of 50% (which they may not have even known), their partner was healthy when they had children, no signs of HD until later on. So when they had children the risk was 25% for the children, but when the father was diagnosed with HD that risk went up to 50% and then these families were incredibly unlucky to have children who got HD very early in life (JHD) which only happens to 10% of HD cases globally. So yes there was some risk but they wouldn't have ever been able to predict would happen back when they had children.

@@HDYOFeed but it was preventable

HDYO you can comment the same thing every time you come across this observation. But that doesn’t take away from the truth. The families that knew the risks and willingly had children are careless and it’s quiet horrible that they would put their children through this. I’m sure they’re loving families but also doesn’t take away from their decisions.

All the best.

Because they didn't really know much at all when they had children. You are just looking at how things are today in this video and assuming the families had children knowing they would be ill and die from HD. That's simply not true. First, none of these mothers have HD it was their partners who did/do. The mothers all came into their relationships with their partners without no clue of HD, then they here that their partner has HD in the family somewhere, the partner is at risk but at this point is completely healthy, when they have children the partner is still at risk (50% and healthy), so their children are 25% risk of HD. Most of these mothers didn't even know these risk numbers I am just telling you this because I know the genetics of HD. When these mothers had children they didn't understand what HD was and how serious it is, and it would be quite difficult for them to fully understand HD coming into their partner's family having no experience of HD before that. They knew nothing. Even with this, the odds of their child having juvenile HD are extremely low and they were incredibly unfortunate that their child would become symptomatic at a young age. When you know what I know about these mothers you know they are fantastically loving and caring mothers, not selfish at all. I hope this helps understand. But it is difficult if you aren't aware of how HD works genetically and within families to understand that these decisions were not selfish at all.

I agree, but I think you have to have some humanity, compassion, and understanding. It’s a part of the human condition to be willfully ignorant and even selfish because we all want a normal life, which can include starting a family after getting married. After all, our strongest biological instinct is reproduction. Not to mention that some of them did not know the genetic risks and prognosis when they had children. On top of ALL THAT...think about the number of unexpected pregnancies in the world! A lot of our children weren’t planned! Healthy parent or not, a certain amount of that population belongs to HD parents

@@HDYOFeed You write the same nonsense everywhere. 25% risk oh HD? That percentage is enormous. Who in their right mind would do that to their child? Would you send your kid to school tomorrow if I told you there's a 25% chance some nut opens fire and blows your kid's brains out??? And that's a much nicer way to go then Huntington's....

Whatever way life directs you, I hope you feel peace and happiness in the company and energy of your loved ones

Kaytlin Waggoner I am in a very similar situation. I'm 17 and am feeling symptoms. They probably have a lot to do with the fact that I'm stressed and worried all day. As horrible as it sounds, I'd be so relieved to hear that I would get it later in life than get it now.

Hi Kaytlin, thank you for sharing, you are not alone in having these fears. With your mother having HD it is unlikely you would develop HD early in life (if you did have it at all). If you would like to talk privately email me at matt@hdyo.org

Get tested if you are able and yes, reach out to HD help groups. All the best

I’m sorry to hear.

I quite like being alive. I don’t know what the future holds for me, but I’m glad I’m alive. I have a husband, I’m a PhD, and I’ve done some wonderful things with my life so far. Im sorry you wish I never existed.

@@thisismyname6715 lmfao what? If u were never born, u couldn’t miss what you never had. Its not like someone is killing u when they decided not ti have kids.

Not everyone knew...it is a highly stigmatised disorder that was 'hidden' by placing ill family members out of sight in places such as asylums or even now in nursing/residential homes. I personally would not have children if I was a carrier I actually have a child who has adhd/autism and would never consider having anymore children because of the guilt I already feel for the struggles my son faces daily.

if god blessed them they would be ok ??? what happen did his ''bless'' miss so absurd just one time I want to see a miracle where a god was there and did something

All the best to your family love. Be strong through this trial and error, I'm praying for you all 😌..

Don't give up hope. That is a lot of pressure to put on someone so young. Talk to your mom and make a plan to help make good adjustments. When or if she does start showing signs there are care takers who can come to your home and help with her care. She will always be your mom and she will give it her all and more for you and your family. Don't give up hope 🤗

Something to remember is that if you do have it and you choose to have kids, there probably won't be a cure for them. Genetic testing can allow you to have your own kids, but without that it's a 50% chance they will have it too. People for decades have thought a cure was right around the corner so they didn't worry about their kids, then they got sick and died. Good luck

A very intelligent and accurate comment, thank you! We know all too well these families are not selfish and their situations were unfortunate. They are extremely loving and caring families. They have dealt with terrible challenges and have shown great courage to come through them and make the most of their situation. They have been so brave to share their stories for awareness of Juvenile HD as well. I have nothing but respect for them.

SUEPREME beautiful comment from your heart ❤️. Why are people so rude and unkind . Your sweet words really made my day . I hope some one learns from what you said .

SUEPREME what ppl are saying is that these parents didnt think this though. they could always adopt and this way they could save a child

HDYO they may not be selfish but they were irresponsible. when you choose to have kids knowing that there is hd in your family you shouldn't only think whether you could handle it or not. you should also think about the child and this is clearly something that they didnt do. ppl accusing them of being selfish isnt ridiculous. maybe using "selfish" is a poor choice of words but still

You can't talk on other people's behalf, they used and chose the word selfish. That's what I replied to. Also you need to understand that some parents want to have their own children, and it is a 50 percent chance so they may take it. I'm not saying this is the best decision but they do have that right to take that chance. However, I understand your point. Though, we will never know what the circumstance was. Some people may be uneducated, or may have not even known that they even had HD running in the family, or may not know exactly how genetics works e.g. If they didn't have the dominant gene, they may think that there is no chance of their child acquiring it. Despite this, this is the situation that they are in. You can see that they are suffering, it is not easy. They are there supporting their children and dedicating their whole lives to them. Therefore, I find calling them selfish rather disrespectful and VERY inappropriate. You are just an outsider and you are commenting on their personal life which is something you know nothing about. Including; how they got there, or how it feels like to live their life everyday. Imagine if you were suffering with a disease and you have completely changed your life to support your child. Going through a mental and physical battle everyday. And despite this, people still have the audacity to call you selfish or irresponsible. Also, this is not heaven. Unfortunately, not everything on this planet is perfect. There will always be disease and suffering. Therefore, I think the least that we can do is educate and support those who are strong enough to battle through it day by day.

Southern Cross Soldierz beautifully said. best of luck to you and your family!

+Liradu2 I totally agree!

Thanks. But I don't see myself having kids

idk why but i just got the feeling of wanting to be happy and positive and not "scared" of death anymore although i still want to finish school, and have kids, i still now except if i know im dyeing God did it for a reason maby to save me from further suffering and pain, and mabey even so i don't need to experience what bad thing could happen to others, family and etc. WOW this comment really made me feel this way, Thank you SOO much for making me love myself and life :). And not wanting to die, but not be "Scared" of death, but help,and understand others instead. ,

Mirror Neuron thankyou so much. you and your knowledge could help people like me in many years to come. i respect you so much. people like you are my glimpse of hope at the moment. its so good think this way, i admire you.

Mirror Neuron I am lucky that I am young so that the hope is there. I do not know if I am gene positive yet, but my mother is. As long as I don't develop JHD, I at least have hope that if not me, my siblings may see some sort of treatment in their lifetime.

Well we may have a cure :) - Kings College London.

Ri'saad the Khajiit I'd like to ask you a question. If you could find out if you carry the cancer gene or autism gene, would you? Would you then not have kids because there is a chance of them having it? Some people have no idea. Its easy to say, do this and do that but when it is your own life and it is a real situation, not a hypothetical, things are different. Would you want to find out the day you are destined to die if it was possible. I'm sure many wouldn't. Its not ignorance, it wouldn't benefit me to know and I would rather my mother never knows if she has passed it on. Imagine the guilt when she had no control. That's another reason I just live my life and have a child (shock horror) because if my mother had access to these tests back in the 70's I wouldn't be here. Well I would because my nan didn't develop symptoms until she was around 70 and genetic testing only became available in the early 90s. There's another thing for people to consider. They have only been able to test for this gene for just on 20 years. Cut out meat and dairy, excercise and be kind to your brain are my tip for anyone with any risk of inheriting. And for anyone without a risk to themselves, mind your own business and become educated before you sound like an ass.

Grace Tyla I have the most aggressive BRCA gene. I watched my mother die a painful,undignified death from heart failure due to the chemo drugs that “saved her life”. What life? She spent the remaining 10 years of her life being half the woman she wanted to be and even if that was still 10x the woman most could be, it’s devastating to not be able to live to your full potential. You feel ashamed to go from being a hard-working, independent person who took care of everyone to needing someone to wipe your ass and be tube fed at 56. Unless they develop a way to treat or cure cancer the way you would a flu or a cold, I’m not having biological children. In all senses, having children when you KNOWINGLY have a hereditary disease is no different than injecting a virus into them. People need to stop thinking about their “right” to have children and think more about a child’s right to live a happy, healthy as possible life. People need to stop thinking about how sad they’ll be because they can’t fulfill their dreams of having a biological child and think about the dreams their children won’t aspire to because they’ll be DEAD. Those are the facts and, thankfully, in this world facts will always be true despite people’s desperate feelings.

Grace Tyla if you are at risk of inheriting anything, cutting out meat and dairy will do nothing. It’s good for the planet, but will not stop a genetic monster-or most other diseases for that matter. And to answer your question, no I would not have children if I had a gene that would put my kids at a significant risk of developing a horrible. That’s cruel to them and selfish of me. Having children while knowing you may doom them to this is not rational.

oh my god....

Alisha 98 what's the thing called?

If you don't mind me asking what did she pass from? I'm quite sorry this happened to you, but at least they are together and not suffering anymore

I think the disease is on her channel? Not sure

No, she is speaking from a position of looking back on how HD has destroyed their family. They already had children by the time the father was diagnosed with HD.

@@HDYOFeed no, in the beginning she said she knew her husband's mom had HD when THEY FIRST MET. She knew and still had 5 kids with him!

​@@kathmandoozle Wow, so much knowledge you have. Not all her children were with the same partner as he eventually became too ill due to HD. Knowing that your partner's mother has HD and truly understanding what that could mean are two very different things, but you wouldn't understand this because you don't know HD and are just being judgemental. When they met the partner's mother had HD and her partner was at risk but not tested nor symptomatic. His risk was 50%. When they had children the partner was still completely healthy and the children had a 25% risk of HD coming down through the father. Unfortunately the father then became symptomatic with HD and this meant the children's risk increased to 50%. Sadly one child then started showing symptoms, it is very rare for a child to have symptoms of HD, usually it happens later in life, so the family were unlucky. But go ahead and educate me on HD and the situation.

@@HDYOFeed It seems considering that you are so defensive and have so much knowledge of this family that YOU are this woman, and also created this video? Am I correct? Look, like it or not - a parent who haphazardly has children with someone who has this disease in their family is not being responsible. Most people in this world have children for selfish reasons... they want to start a family, they want to raise a human, they want to have a legacy, etc. It's fairly normal. But, when you have children knowing they have a disease in the family without educating yourself OR even knowing thar they have a 25% chance of getting the disease... that is irresponsible, selfish, and in some ways pretty cruel. You may be a good parent now, but that is a really unfortunate choice to make that your children have to live with. We don't have the medical advancements yet to cure HD or stop it from passing on. Therefore, we should be advising people who have HD in their family to NOT have children. It's as simple as that.

@@kathmandoozle you lack empathy is what your comment is telling me

Because they didn't really know much at all when they had children. You are just looking at how things are today in this video and assuming the families had children knowing they would be ill and die from HD. That's simply not true. First, none of these mothers have HD it was their partners who did/do. The mothers all came into their relationships with their partners without no clue of HD, then they here that their partner has HD in the family somewhere, the partner is at risk but at this point is completely healthy, when they have children the partner is still at risk (50% and healthy), so their children are 25% risk of HD. Most of these mothers didn't even know these risk numbers I am just telling you this because I know the genetics of HD. When these mothers had children they didn't understand what HD was and how serious it is, and it would be quite difficult for them to fully understand HD coming into their partner's family having no experience of HD before that. They knew nothing. Even with this, the odds of their child having juvenile HD are extremely low and they were incredibly unfortunate that their child would become symptomatic at a young age. When you know what I know about these mothers you know they are fantastically loving and caring mothers, not selfish at all. I hope this helps understand. But it is difficult if you aren't aware of how HD works genetically and within families to understand that these decisions were not selfish at all.

No you should never adopt. It is selfish to have children in any shape or form. That isn't fair to an adopted child to watch their adoptive parent die. Many adopted kids have their own issues and trauma don't add to it. I was adopted into and grew up in an HD home it was awful. Selfish to have children with that illness period.

It appears than in many places the case workers won't allow the HD affected families to adopt because of the risk of early death for one of the adoptive parents.

It is selfish to adopt knowing that you ahve HD. I was adopted and grew up in an HD home. It was awful. Children who are adopted have their own issues and trauma don't add more to it.

We should start with keeping you from procreating since you're obviously too stupid to understand that genetic diseases always start out as spontaneous mutations. New mutations form all the time. Two perfectly healthy people can have a child with any genetic disease. Where do you think people with genetic diseases come from in the first place? Spawned from thin air? Existed from the beginning of humankind?

Aric Mackenthun I wonder if stem cell research might benefit

Fucking sick, babies have to be murdered to make these drugs, cancer drugs, vaccines....

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