Living with Juvenile Huntington's Disease
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- Опубликовано: 26 мар 2017
- I'f you'd like to learn more about HD and JHD, please visit www.HDYO.org. If you'd like to help support young people, like these in the video, impacted by HD, please consider making a donation to HDYO here: en.hdyo.org/eve/about/587
Four families bravely share their experiences of living with Juvenile Huntington's disease. HD is a genetic brain condition which results in someone slowly losing one ability after another until they will eventually pass away. There is no cure or treatment to slow/stop HD. We advise viewers to be aware that this topic may be upsetting, if you need support email us at support@hdyo.org'
RIP Elli 2021
My parents both had HD! They adopted me and my 3 siblings. I am extremely thankful for that. Sadly our time with them was too short 😢
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 🙏
this is so sad.
this runs in my family.
i was so scared id have it but when i got older my parents told me im adopted and thats why they didnt have biological children.
my heart goes out to anyone suffering from this or anyone they love suffering from it.
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
I don't think I could bring myself to purposefully have a child if I had the genes for hd. I am so glad for the kids in this documentary that have wonderful families/good support systems
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.
There is a big problem of denial in many HD cases and that's also one reason why children with the gene are still born.
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.
My mum has Huntington’s disease.
I’ve looked after her since I could remember.
I’m 11 and I still help her with things from feeding her to helping her shower and getting her to bed.
Only people who look after people with Huntington’s disease understand how
Hard it is.
**UPDATE!
My mother is now in one on two care meaning that she is getting more then any support, looking after and support then I ever could, I miss her and I still see her every weekend, it sure was tough and I don’t know where god will take this next but I’m so grateful and thankful for all the kind words and support even whilst 2020 is going down hill I hope you kind souls won’t go with it.
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.
HD is the reason I don't have kids. I wouldn't risk it. 3 of 5 of my grandma's kids got it, luckily not my dad. My dad's cousins also have a high rate of HD, over 60% have it.
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
I have a number of health conditions that are inheritable. While I appreciate these parents’ struggle and optimism, I think until you know what it’s like to truly live with chronic, debilitating symptoms you aren’t fully informed or equipped to make the decision to have a child. All I ever wanted was to be a mother. And yet I won’t in this life. Because I know I’m a better mother by not having children, including by adoption. I have watched my father nearly die and suffer so many times as a child, and now I have gone through the same. I can add a broken heart to my pain but I will gladly carry that burden myself and not send down a family curse. This of course is only my opinion, and everyone has a right to their own without judgment.
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.
My cousin has JHD he was diagnosed quite young and is now 19. We have been told he is now in the "last stages." We have to spread more awareness about this, alot of people haven't even heard of Huntingtons disease, this video is eye opening 💙
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.
As a child I always knew I'd hit the lottery. What I didn't know is it was the genetic lottery. My mother is the sole survivor out of 6 siblings, all who passed away from HD. SHE TESTED NEGATIVE, SHE WAS THE CAREGIVER. Id have to say that's like hitting the lottery but the winnings DON'T out weigh the tremendous loss 😢. I am thankful my mother is here I just wish she was too.
By the Grace of God go you. ❤️✝️
My friend died at 26 with this. At first we thought she was drunk or taking drugs. It was devastating. She ended up totally dependent in an elderly care home. Absolutely horrendous. I truly believe in assisted dying and I know my friend would never have wanted to die like this.
Honestly, I can’t emphasize how important genetic counseling is if you’re planning a family. It’s expensive, it’s not for everyone, but if you have a known genetic disease in your family *please*, as a person who now lives with an incurable genetic condition, get genetic testing done.
100% agree. If genetic counseling weren't so expensive, I'd suggest everyone to do it.
my grandfather passed regular hd onto my dad and uncles without their knowledge because my grandfather wasnt in their life. my dad and uncle got hd later in their lives, after they already both had children. my family became aware of it being in the family when they both found in their mid 40s, when my cousin was 25 and already had a child with his girlfriend. then after my cus had a child when he was 25, him and my 25 year old brother both got hd. now my brother and my cousin are both in their late 20's with extremely bad huntingtons. my other brother who wasnt showing any symptoms , decided to get tested for it and tested positive this week. that makes three generations of my family tree that all happened due to lack of knowledge about this disease being in our genes due to my grandfather with hd passing away before he could get hd. this disease has taken my dad, uncle, both brothers, cousin , and maybe me and my nephew... it has honestly completely destroyed everyone around me except my mom, who has horrible depression from losing everyone
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.
I have tears pooring down my face. HD has now finished for our family. My baby brother with juvinile HD is now in heavens and was the last person in our bloodline to carry it. Strenght and courage for all the Warriors out there and their families. Please if you are at risk please check yourselves and for no reason do do procreate unless your are sure of being HD free. This is our only hope for the moment of putting a halt to this horrific disease
My stepdaughters mother developed symptoms of Huntingtons disease in her mid 20s. She got into a few car wrecks one after another, and she went downhill rather quickly after her diagnosis. Her husband ended up putting her into a home because he was unable to take care of her and their 2 young daughters while also working full time. She was only at the nursing home for a little less than 2 weeks when she hung herself from a pipe in the bathroom. And you know what my first thought was? I probably would’ve done the same thing.
And now both of her daughters, in their early 20s, are showing symptoms. One has tested, found out she’s positive and she’s doing every kind of treatment she has access too. The other daughter is addicted to drugs, living in the streets, in and out of jail and in complete denial.
This disease is so fucking horrible. The way it tears apart families is what makes is so much worse to me than others.
My boyfriends father had HD. He had FOUR children knowing that he had it. He passed about 2 years ago, rip. But THANKFULLY my boyfriend was tested about a year ago and he does not have it. ❤️❤️❤️ his two sisters also do not have it!!! It’s a miracle. He has a younger brother that is not in his life, I don’t know if he is aware that his father had this disease but I pray he is as lucky as his three siblings. Rest In Peace to those that have died and had to go through this hell. ❤️❤️❤️
I have a genetic condition, bedridden at 44yrs of age. My son inherited it and has struggled since 8yrs of age. I didn’t know I had this when I made him, and once I learnt I did have it I didn’t roll that dice and risk giving it to another person. To say that you are going to have that lovely little baby, and have a lot of time with them, god that infuriates me, this is a human being, not a puppy, if you have a hereditary genetic condition that destroys lives, don’t 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
I was a nurse for 33 years. The first time I took care of an adult with HD, it exhibited horrible symptoms in the patient. It is very heartbreaking. But, for children, it is extremely SAD. I always gave my all as far as great care, empathy, and sympathy. God bless the families.
The patience and gentleness Sheenams mom (and the other parents as well) shows in allowing her time to speak and express herself really touched me. God bless
This disease is definitely something to look for when doing genetic testing amongst the Family. It is one of the most terrible progressive diseases.
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.
me and my brothers have agreed to never have children because HD runs in the family, some of these people need to consider the risk more seriously
We are on the shoulders of giants guys. Please consider what this Dr has been working on in his career: ruclips.net/video/utyfgjKwzXY/видео.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 RUclips 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 got my blood drawn 2 days ago. Waiting 3-4 weeks to know the results. Wish everyone best of luck. Take care. -San Francisco, California
How did it turn out, buddy?
And???
Tell us please
@@TJ-ik9on haha lol
hope you're doing alright little amogus guy
Huntington’s as been in my life forever. I’m a survivor. Please pray for my nephews, they are awesome. My sister was not a survivor. A male has never passed it on in our family. It’s been all females. Please help me pray for these awesome young men, that both have college degrees, both have beautiful, great women in their lives. Pray for me because I’m the bearer of bad news for them. Looking Huntington’s straight in the eye is the best way to deal with it. No secrets, and staying informed.
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.
My teacher's wife has HD and they've decided to not have children because they don't want the child to have to take care of his mom or have HD
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
I was a hospice nurse, I took care of ppl with Huntington's disease, I feel Huntington's is one of the worse diseases out there. God BLESS you all!!!
I am really close friends with a family who suffers from HD and JHD. The father lived with it for 7 years after being diagnosed and died from it, and now 3 out of the 4 children have been diagnosed with it. The youngest one is barely able to walk and cannot eat on his own (he has a feeding tube). HD and JHD is a very real and serious disease that affects so many people, and I hope and pray they can find a cure for this disease and wipe it out. In the meantime, I highly recommend getting tested for this disease if it runs in your family and NOT having kids if you have it.
Are they alive by now?
@@irenebernardi703 the youngest one died, and the middle one isn’t doing well. The oldest is struggling but still has awhile.
A close friend of mine had their parents hide the fact that my friend was positive for HD because they knowing passed it onto them. My friend disowned their parents and has been celibate solely out of fear of making the same mistake, which from the suffering I have seen them go through at the knowing hands of their parents seemed awfully selfish and cruel. I hope these kids are still fulfilling their goals and living good lives, no one deserves to have suffering be the main event of every day, live life to your fullest capabilities
I’m a nurse and have just recently had a patient with HD, it’s an awful awful disease. It robbed the lady of everything that she was and had been and I wish her a peaceful end so that she is relieved of her constant suffering.
I am starting my PhD program my research focuses on Huntington's disease happy to contribute my time for this major cause
God bless you afrin b. Good luck with your research and Graduate Studies. From Philadelphia, USA
I'm not saying it's selfish to decide to have children when u carry HD but like......WHY DONT MORE PEOPLE ADOPT????
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.
They had children knowing the risk 😱
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
I really cannot believe that someone would play russian roulette with a child's life knowing they carry such an awful genetic disease.
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.
My grandma had Huntington's disease and passed it on to one of her three children, my uncle. My grandma passed at 36 and my uncle at 22. I remember seeing my uncle endure the progressive suffering of HD, he was so young. I'm truly thankful and lucky my mom didn't get it. My grandma was adopted so there was no knowing she had the disease. My heart goes out to all the families dealing with HD.
Thank heaven there's testing for this. I would never have children if I knew I carried the gene.
When I watch videos like this, I realize how weak I am. The strength of these people is incredible.
My grandfather and two uncles died of this disease. My two uncles were reported at work for being drunk. I had the test for HD in January 2017, it came back negative. this is a really awful disease and upsetting to see your loved ones suffer
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.
they knew the risk, but they wanted children.
Breaks my heart 😭😢
Wish them all the best
@@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.
My mom has HD We decided my husband and I not to have children but that our personal choice.. if it runs in your family and you want to have children please please do it the right way either adopt or do genetic testing on your embryos and if you can’t do either don’t do it... I hated my mom for some time for having it and felt so bad about it, it isn’t her fault and I feel sorry for her.
My dad has had this for a couple of years. It’s difficult watching his body slowly break down, it has been rough. I pray for anyone that has Huntington’s affecting their life in anyway🙏🏼
All the best.
Im 45 and have Huntingtons. I never had biological kids but have loved my two step kids as my own. I love them so much and have never regretted any decision about having kids. The first time my kids met my mother she was bedridden and if you know, you know. Im thankful to god for these two blessings in my life. Im greatful for everyday.
I think a lot of people with the HD risk have magical thinking, where it won't affect your kids until they're adults and there is a cure. Every prospective parent with the risk should watch this to make an informed decision.
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.
I lost my 2 half brothers to this. Anthony Lane Ricky Lane aged 15+23 my heart aches and always will until a cure is found😢
I'm so sorry
Truly a profound disease. I had no idea before watching this video that it could affect children as well as adults.
I have a personal friend that has inherited Huntingtons.
Once a brightly intelligent nurse, she was afflicted and soon had to leave her career. Her mother and sister succumbed to this years ago. Fortunately my friend has a kind and loving husband. He takes care of her so well.
My heart goes out to all of those living with this devastating disease.
A friend of my sisters died of Huntington's Disease and so did her brother. Their parents decided to have children sadly putting their children to die a horrible disease. Helen my sisters friend died in her 20s but her brother Peter actually married and his wife Mary decided not to have kids. Peter's life change in his 30s and he suffered a horrible death.
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.
I just want to hug them all and feed them ice cream....IDK WHAT ELSE TO DO
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
If there is Huntington’s in the family, please adopt.
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.
What is really heartbreaking is that some of these people knew it was in their family, and they still had children, as if they thought they would take a risk and put someone through that, it does not matter how positive their lives have impacted others, it is their lives, and no one has the right to create life, making a decision, knowing they could pass this on by chance.
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.
Absolutely horrible disease! Lovely supportive families. Also Sheenam is so stunning!
My brother and I have different fathers and he has HD. He's 45 and I'm 42 he's in stage 4 now. It's so hard to lose my best friend and when he was younger he had learning problems and they thought he was mentally challenged in the 90s. By the time he was around 30 he started showing stage 2. I wish I had some support group for my mother and I we both take care of him.
My mom has this and I've lived in fear of it my whole life. I have had mental/emotional issues and an eating disorder, panic attacks, etc since I was young and i'm terrified that every mental symptom or every clumsy mistake is a sign. I already am terrified of getting it at all but i'm especially terrified of getting it prematurely. I have struggled so much in my life thus far, I have finally found some semblance of happiness with my fiance... Please, God, let it be late onset, if I have it...
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.
To anyone that has family member(s) who struggle with Huntington’s! You are not alone. People are there to help!
I love how patient these parents are with their children.
R.I.P to everyone who has died from HD ,and good luck to everyone who has it or has any family members with it ❤️❤️❤️
My cousin was diagnosed this morning with JHD. Found this video while trying to research. She’s 11.
Mia was from my town. She is on a local memorial that the local high school is going to take down! Rest in peace sweet child ❤
Why are they taking down the memorial?
Yes why would they take it down?
While working in hospital I had a patient with HD ..He was a 30 year old Named David Cullinane , may this wonderful man Rest in Eternal peace🍀.
Be blessed
8:21 she got so excited! I’m glad to see someone working in that field actually cares about the people they are trying to help
The comments are so heartbreaking. My heart goes out to you all. Everyone with a family member suffering from HD should be tested before having children. To knowingly take the chance is beyond my understanding.
It's sad to see all of the negative comments on here from those who have no idea. My mom had HD and I am still glad to be here...
No one is saying u shouldn’t be. Yall are acting like we’re personally attacking YOU. We are saying this because we dont want someone living a life scared of when or if they’ll get this. Maybe ur fine, but there are literally ppl in this comment section saying theyre scared. The thing is, if u were never born- nothing. There would be no feelings for u to feel. Its better than life. U cant miss what u never had.
I have a mentally ill parent and I live with crippling anxiety every day thinking I'll wake up one day with it. That could have been prevented if my parents chose not to have children given the risk involved (my grandmother has it too). Sure, life hasn't all be bad. I'm privileged and if problems happen, I will be okay, it's just more crushing witnessing ones close to you suffer and thinking of your own possible chance at that. If my family was closer and more loving maybe I wouldn't care so much and I'd be appreciative to be alive but as of the past 10 years I really wouldn't be mad at not having existed in the first place. Since I'm here I'm forced to stay and play the game of life through.
This is so heart breaking and hard to see, I had no idea it can affect children. As a soon to be neuroscience major this fuels my drive to study like nothing else. I really want to work in my universities HD lab. If my grades are high enough to get accepted in the HD lab I will hit this as hard as I possibly can for these kids and families. They are doing experiments in mice with HD and it looks very hopeful.
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.
I helped care for a man that had JHD for years. He was amazing, extremely positive, funny, and outgoing. He lived much longer than the specialists thought he would. This world is a sadder place without him in it. Working with him changed me and my coworkers lives for the better.
His family was amazing, and his poor mother had to sit and watch this disease devour her son, and wonder if her other children would be affected by it too. So incredibly heartbreaking 💔 😢
Lord Jesus Christ please comfort and heal these children.
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.
I feel your pain with dealing with the disease and helping your family members cope to wash, clean, eat etc I’m 14 and I hated my mom for waking me up early and pulling my hair but I soon realised that she had become more restricted on washing up and walking and eating so I changed my thoughts and helped her my 5 other siblings didn’t help until she was separated and put in a care home and realised she was getting worse, I’m glad I have been with her I visit her 2 - 3 times a month but she lives a 1hr and 20 mins away from me and COVID exists and I can’t drive to get to her. I believe she’s at stage 5 she can’t walk she’s been living on her bed for 2 years, she can’t eat probably so she’s had a peg attached on her stomach to help her eat and she can’t speak properly and screams. But I can’t help her whilst I watch from a glass window. My heart tugs on the strings and I shed a tear after I leave her with carers. I hope she sees her son grow up and take care of her children
The bond between all these children & their mothers is inspirational. The moms cling to them & support them so selflessly.
If you know that a crippling desease runs in your family or your partners family please just dont have kids. Honestly it is cruel. Its not inspiring, its unfortunate to put yourself and your family through that.
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.
Forty years ago I met a young man about eighteen and in the US Army when he began experiencing dangerous mood swings and some motor symptoms. He was medically discharged. He had no problems speaking when I met him. He told me his father had it. Back then there weren’t tests that could tell you if you had the gene or not.
These courageous beautiful kids are AMAZING!!! And so are the parents!!!
I took care of a man that HD at the nursing home I worked at. He was 41. I had to do everything for him. It would be hard at times for him to eat because of his movements. His wife just dropped him off one day and never came back to see him. He became so depressed being in the nursing home and would tell me to just let him die as quick as he could. He would beg the nurses to give him something to go to sleep and never wake up. It was heartbreaking to watch him decline with his health. When the end came, he whispered to me thanking me for treating him like a human being and being by his side for the best and worse moments of his life. I say with him until his last breath. Finally he was at peace. They called his wife when he got bad and she told them to not ever call her again. She said just to take him to the funeral home and put him in a home somewhere. She didn't care. I hope I gave him comfort while I took care of him. Prayers for the people who are going through this. 🙏❤️
so sad I lost 2 bros to this awful disease 😓
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.
Wow this is my first time hearing about this condition. This video has educated me so I thank you for that.
Koby and my sister were best friends at school ever since they were little. Koby sadly died on my sisters birthday then my sister joined him 7 years later from a very rare condition there are only 11 people world wide with it and non have past 20 years old. But we still have a very close relationship with the family.
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
“I knew that (HD) runs in the my husband’s family when I got married” ... So she went ahead and had kids. WTF
Have tremendous sympathy for these innocent children. Their parents, not so much.
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
I knew a family that had child after child knowing they were passing down cystic fibrosis. I lived on the teenager ward of a hospital about 10m out of every year for 5yrs of my childhood and also went to school with the patients. (my sister was a patient) I sat with sibling after sibling as they passed. No family ever visited them or came when they passed but that family kept having children Knowing what the outcome was. As a young teen myself, watching those kids, who were my only friends, I was very bitter.
My husband and I are watching this and thinking if your kids are the biggest love of your life, why would you make them go through this when you know you have the gene??
I rather to not know what a kid of mine would look or will be.
I will never forgive myself if I will intentionally put my child going through such pain just for the sake of having a child.
This is the most selfless act I can think.
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 pray for a cure for this awful disease. My thoughts, prayers and best wishes to all these people affected by Huntington's Disease and to the doctors and researchers who are understanding more about this disease in order to build therapeutics to combat it. x
Oh my gosh Elli's my cousin! my dad also has huntington's and its really hard but thanks guys for making this it means a lot!
Such a brave children. I as an adult hd patient would give some of my years for them.. HD is one of the most horrible deceases known to mankind. Children should never suffer like that so much.
This disease is just horrifying to watch...... 20 years ago I was a nursing assistant working pool, and one of the facilities I got sent to was a state hospital......of the patients were car crash victims, or suicides gone wrong , so major brain damage, but there were 2 women with HD there and they had them on waterbeds with padded walls around them....they barely ate, and just flailed around most of the day......they had shaved all their hair off and they just had them in adult diapers and a t shirt...........it was the most horrible thing I had ever seen.....they stuff you hear about but never think exists............I never went back.........it was a basement of horrors where they kept the severely damaged hidden.......no windows, all concrete and sterile.....reeking of urine and feces.
I'm so glad someone can take care of my mother so she never has to go to such an establishment ....
HI @sarahrose0413, thanks for sharing. Really sorry to hear that was your experience with HD. What state hospital was this at? Maybe we can reach out and try to educate them. Thanks!
had the horrible "opportunity" of seeing the same thing whilst being inpatient for depression. It was inhuman. Will never ever forget her.
sarahrose0413 n
sarahrose0413 I hope you filed a serious report against this hospital!! They are in violation of several human rights laws and need shutting down.
This is heartbreaking. It's hard enough for adults to live with this terrible disease, but to afflict kids? That is too cruel.
yet another reason why we should be grateful for life!!
i didn't know what hd was, but i'm glad to be informed on something new.
A classmate and I decided to make our bio presentation about Huntington’s. This video has been very helpful. I’m so glad the children have supportive and loving families/parents. I hope the best for all of them.
All the best with your presentation
There’s a trinucleotide repeat pattern in chromosome 7 ! So with each successive generation this mutation accumulates... so progressively the age of onset will decrease as more mutation repeats mean more abnormal proteins and faster onset. That’s why it’s important to identify the person who has it ! Also it’s an autosomal dominant type of disease ! Which means a 50-50 chance of transmission into the offspring so wary gene testing can be helpful
all these comments make me feel so incredibly lucky that HD doesn’t run in my family. i can’t even imagine it
Thank you to these brave people for sharing such sensitive stories, I'm gobsmacked, I too thought it was an elderly persons dilemma.
My family has a Best Case Scenario version of HD. If you have to have it this is the way to do it. Main symptoms are light to moderate tremors and problems with things that require a cadence, like a slight stutter to speech. It's not uncommon to have very short tempers in affected members. One or two are so anti-social that it's a big impact on their life. Swallowing difficulties usually develop when we are old. My grandmother and one or two other relatives have died of pneumonia because they aspirated food or drink. It's a hard disease to explain, even to doctors who haven't studied it because there is a whole basket of possible symptoms and not everyone has the same combination.
My ex boyfriends mom died when he was really young, his dad raised him. His dad just died of Huntington’s. When I first met his dad you couldn’t tell at all. It only took a few years. I started working in a nursing home shortly after and my heart breaks for the youngest man in there who’s suffering with it. My heart goes out to everyone dealing with this from young to old it doesn’t seem fair. My brain broke down from lyme. I just got back from Mexico from getting stem cells. I wonder if it’s being studied for huntingtons since its a motor neuron signaling if it can be halted and patched up as well.
To all the families in this story and for all the families that have to battle this horrible disease. I am so sorry for what you have to go through. And to all the families who have lost loved ones to this horrible disease I am so sorry for your loss.
I really wish that doctors can find a cure for this horrible disease.
Aric Mackenthun
I wonder if stem cell research might benefit
Fucking sick, babies have to be murdered to make these drugs, cancer drugs, vaccines....
👨⚕️👩⚕️✨ We are on the shoulders of giants. Particularly this Dr: ruclips.net/video/utyfgjKwzXY/видео.html ✨👩⚕️👨⚕️
Sheenam's case at 4:59 mins broke me to the core. I count my blessings every single day that my dad went through genetic testing before having children so he could end the cycle of HD in my family, I cant even imagine how its affected him or how scared he was to find out. Im not really religious, but i thank god or the angels or lucky stars fate or everything that were alright
A nice comment Daisy, thank you
Humbling. These mothers' strength is beyond belief and their love for their children is moving. I should have such courage and fortitude facing my relatively easy and comfortable life.
Thank you so much for sharing this. I'm in medical school with a neuro exam tomorrow about the basal ganglia. Just finished reading about the clinical aspects of things so i went on to watching something that could close the chapter for me. I'm so glad to have stumbled across this, it reminded me of how much people I can help when I finish my education. God bless the children affected by neurodegenerative disorders and their families.
Egotistical much??
My best friend had HD, as did his Mom and most of his Siblings. I've lost most of them now, what a sad cruel way to watch someone go.
Some of these people actually knew the risk of having children and the significant potential of their children inheriting the genetics for this disease to form. Why would you do that?
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....
Thank you to the children and families who participated in making this video.
I honestly had tears watching this.. Bless you all
Thank you all so much for sharing your stories
My brothers ex gf has it. She denied it for years, and he took care of her for about 6 after she started to get bad and even though he was just her care taker and not really her boyfriend anymore.., he never left her until she had to have help. Shes now about 37 and in an hd nursing home in Indiana where shes been for about 2 years. It's the worst disease, it isnt fair.
These are some beautiful and amazing children and families. God bless each and every one of them and anyone affected by this disease!
Man i cried so much, i still am :( these kids are so brave, genetics can suck sometimes
My mom was diagnosed with hd when I was 7 I was so young and It got so bad I hated her and most days she hated me and we would fight her and my dad would fight I remember one time she keyed his care and this disease tore our family apart and she couldn't do anything and I wouldn't go out with friends or do all of that stuff eventually she got ovarian cancer and she choose not to be treated she sacrificed her life so I wouldn't have to see her suffer.She died in January and I regret all of my choices with her I miss you Mommy 😭
Oh my sweetheart, your mom knew you loved her.
Illness makes us do, or say things we would not normally do.
But I promise you, your mom loved you so much, as she knew you loved her.
Stay strong, sending hugs to you x