Everyone is saying the dad abandoned her mom but no... "she stayed in denial" which means she avoided all medication to attempt to control symptoms. As a parent and wife that was very selfish and irresponsible of her. It's easy to say how he should react when you aren't in his shoes.
Thank you for this video, Kristen. I am an English teacher, I teach English as a Second Language to adults from all over the world. Your life is featured in a Chapter in one of our textbooks. The goal is to give students practice listening, speaking, reading, and writing about important social issues, for example; whether or not to get genetic testing for disorders and diseases. We used your video to supplement our reading. Thanks to your wonderful work and your courageous decision to be tested for HD, we were able to get a more complete view of all the issues concerning making the decision to get tested. Your experience has helped us all appreciate the topic of genetic testing for disorders and diseases.
Such a good ending - that is also a beginning. I do think that if I had a neurodegenerative disease, I’d try to get Death with Dignity before ending up completely incapacitated.
Hi Kristen, love your documentary, running tears few times during the video. Feel like I was you, and I could tell a bit what you and your family had been through. And I pray for Nate’s negative for HD. Your mommy must looking at you guys from the heaven and protect for you guys. Thank you for your generous and bravery shares!❤
Very sadly ignorance is not bliss, especially if it effects the lives of the very people that you love the dearest..your children . There are options for creating the healthy family that most couples desire without passing on this or any other nasty gene that will impact the future a child. Life is such a precarious gift without the added misfortune of having this horrific gene passed on to you Kristen and I’m sure it goes without saying that you treasure each day more than most since you dodged that bullet.
I would NEED to get tested. So that I could make reliable plans for my future planned death. No way would I let myself go out in that sort of drawn out misery. I'd enjoy my life to the fullest until my mobility and cognition were clearly at risk, and then I'd be checking the hell out before I got to the point where I couldn't make choices anymore.
I just discover this video . Searching due to one of y patient brother have this desease. Don’t no you , however I’m very happy to no that you don’t have it . Thank you to God , Jesus….. every Angel 😇 and Saint…. Crying 😭 of happiness. Congratulations.! Now I hope , your brother get tested. We can’t hide anything that we can do ,let’s do it. Is part of everyone, responsibility that is at risk. I no is scary but , is the only way to find some cure . In the name of God . Thank you 😊 so much for your story. God Bless .
I know your mom did everything from heaven to influence this wonderful negative result. And celebrated with the angels. Praying for the same for your brother weather he decides to be tested prayers this horrible disease ends with your mom for your family.
It's not true that Huntington's is only apparent in middle age. There Juvenile Huntington's which begins in childhood. Huntington's can also start showing symptoms earlier in successive generations.
When I was getting tested the neurologist thought I showed early signs of HD. I think watching my siblings struggle with the disease it literally convinced me I had it. I tested negative and my symptoms subsided. Please if you are worried, consider testing so you don’t go 10 years convinced you have when it could just be the stress of seeing people around you with it.
I am so happy for you that you tested negative, while at the same time my heart goes out for your siblings... ❤️ We must find a cure for this disease from hell.
I agree with you 100%. I have a friend who's wife had HD. Her family knew about it being in the family and purposely withheld that information from him so she could get married. Many years later, after she died from it, all 3 of their children have it and live in a nursing home. There are 7 grandchildren and some are adamant that they will not find out and are willing to risk passing it onto their children. I do not understand why in the world anyone would fail to be tested when they have witnessed first-hand what their parents are going through. This is one disease that can be irradicated by simply finding out if you have it. If you do, get sterilized. It is cruel and the worst possible child abuse that can be prevented.
@@suestracks Fine, if you dont want to test yourself than I understand. But dont have biologically related children. Use an egg or sperm donor or adopt! Lets eradicate these sort of genetic conditions through responsible family planning.
@@jasminevja8169 Did you read my post? I am the last person on earth that would refuse testing if it was in my family and I think family members owe it to the world to get tested. As I stated, this disease can be eradicated if they got tested and if found to have the gene got themselves sterilized. It upsets me that you responded as you did as you clearly did not read my post. You jumped to some foregone conclusion based on your own perception of what you THOUGHT I wrote. I expect better of people, guess I was wrong. Think before you reply.
@@suestracks when i said you, it wasnt really meant to be directed at any individual in particular.... I have no idea what does or does not run in your family. Anyways, like i said i can understand not wanting to get tested. I understand wanting to just be happy for as long as you can, but what I dont understand is irresponsible family planning. Adoption or egg/sperm donor . It would be even better if they could have it done for free as incentive
I was crying in anticipation of the news and I am so so happy for her. I'm 17 and the thought of having to go through the death of my mother and have to worry for myself and my brother. She is so resilient and such a badass and she is going to do so many great things
If you know you have a parent with HD and don't want to test there is a way trough IVF where they don't tell if there is HD. To judge people like i see in some comments does not help and stings me a bit. if you where not in that position, you just don't know how life can go. Better to give good advice instead of "So wrong irresponsibly and selfish" those comments mostly made by persons not having to deal with it. I have HD and aborted my son because he had HD, That felt like killing myself. I left my girlfriend for not willing to be burden her. Not everybody is the same and you better try making it a positive advice in stead of judging people for them to understand.
When I was tested it was beyond scary but I made a decision if I had tested positive I was going to enroll in every single trial I could. The day I got my negative result was sad and happy. I have 7 siblings with HD and four have passed. I had guilt and it felt so unfair to them. My brother was 35 when he passed and his daughter passed at the age of 21 from JHD. My dads HD symptoms were so mild so non of us understood the severity of HD. I just hope we can find a cure soon.
@@giselevallee1224 he had no clue that it was what his mom had. I’m in my late 40’s and when I was 13 we were told it was male dominate. Back then not much was known about HD so it was impossible for him to know he could pass it onto his children.
❤ same here. It's amazing how many idiots armchair critics come rushing out into the comments section having absolutely no freaking experience of living with a family member especially a parent. I am not surprised any longer though at the amount of ignorance posing as outrage. HD is still considered a very very rare genetic disorder. And even though it is one of the most devastating and incurable diseases, there's just not enough people dying from it YET, TO INTEREST BIG GREEDY PHARMA BOYS INTO RESEARCHING IT! The dementia is what is most devastating to the family and caregivers as well.
Kristen, you are a very remarkable young lady. Your Dad must be so proud. You will go far in this world. Congratulations for stepping up to the unknown and walking right through it. BRAVO!!!!!
Some of these statements are not factual, close friends of mine lost his wife by age 40, his son by age 27 his daughter by age 29‼️ the daughter showed signs in her senior year of high school. So people need to get facts
Very well told... I was diagnosed with a neurological disease in middle age and went a month with a probable diagnosis of Lou Gerhig’s disease...scary"instead have “orphan” disease ...unknown genetics or future. Every day of life is a gift!
It’s a person’s choice not to get tested. HOWEVER that person should NOT have children in fact they SHOULD make the choice to be sterilized. Their personal decision shouldn’t afflict a child who has NO choice.
I understand your point but it’s not as simple as don’t have children. Not everyone can afford the procedure. Accidents happen. If the disease is already progressing, personality changes happen and promiscuity or rape is a possibility. I hope free sterilization is available to anyone with a genetic mutation or who chooses not to have children. Doubtful tho.
It doesnt only arise at age 40-50...theres juvenile onset. I believe that noone should be able to knowingly inflict this risk on innocent children. It is grossly unfair, takes decades of caregivers lives, inflicts years of suffering. I understand fully the rights of the individual to choose, but what about the rights of the children, and unknowing spouses? Is it legal to knowingly choose to torture and murder someone? Children dont deserve that, and now we have the science to test, there is no excuse good enough to justify the damage.
I did not expect to cry at the “good news” result. I was terrified when I saw four chairs, as in “brace yourselves”. I pray your brother is negative too. And my hope is that your mama is looking down with joy.
I watched my step brother struggle with this and die at the age of 51. He did have testing and was diagnosed in his early 30's. His mom died with it when he was 20. It has ravaged his family on his mom's side. I never understood why he chose to have a child or why his child in turn has chosen to have 3 of her own. That's selfish and irresponsible.
@Annie497 your comment literally made my stomach drop. That is absolutely awful that those parents chose to have children naturally knowing those odds and what they would be subjecting their children too, and that the children ended up indeed inheriting the dreadful diseases. So sad. I honestly cannot fathom it, especially with all the options there are available right now for family planning like pre- implantation genetic testing (PGT) for these genetic disorders, adoption or fostering.
So I don’t have kids cus I’m autistic and hard to live with but these folks go ahead and have children no worries? How can you possibly do that to a loved one. These people smh
It's unbelievable. Especially now when many people who has the HD gene is using embryo screening, and implanting a healthy embryo via IVF, so they'll have a 100% HD free child. And in my country, that medical service is FREE if you carry a genetic disorder. They can't hide from the hard truth, they only make it worse...
kristen seems like an amazing girl, i don't have huntingtons in my family but she has inspired me with her attitude to such a daunting situation and life in general (: so glad she tested negative i'm sure she'll give a lot to the world
Thank you so much for sharing your story with us, Kristen. I'm studying to be a genetic counsellor and learning about personal and family experiences of disease is invaluable, especially around a disease that can be so devastating. This is an amazing documentary and I will definitely be sending it onto my coursemates to watch. You are so brave.
Kristen is extraordinary,intelligent and brave Thank for posting this touching and informative documentary❤ Wishing her the best success Tears of joy when it was revealed that kristen tested negative
I also have NF. Mildly impacted, and live life as normal but since I know my children can be severely impacted then I am choosing not to have bio children either and plan to adopt. I hope you are doing well!!
Huntington's disease has to be the worst disease ever! It's like having Alzheimer's/Lou Gehrig's disease/Parkinson's disease and having schizophrenia at the same time!
I was moved by your careful sharing of your story, your family members' stories, and others, knitted with clear information as well as careful awareness-building. Thank you so much for your sharing and fabulous filmmaking
Nothing like being abandoned when your on your way out!!! The husband should have stayed even as just a loving friend. You were in love at one time, you shared two children together for Pete's sake! I understand that when your ex wife was no longer aware of her surroundings, and unable to function at all on her own. Thankfully your daughter was tested negative, thank you Jesus 🙏🙏🙏
I guess Jesus didn’t care about Nikki or all the other people who suffer from HD and so many other horrible diseases. And I believe Kristin’s parents split before Nikki was diagnosed.
Your words about abandoning Kristen’s mother echo my thoughts exactly. No respect for partners that bail as soon as things get difficult. What happened to actually honoring marriage vows- “for better, for worse, in sickness and in health.”
I initially felt the same way but heard the mom’s behaviour was getting out of control (symptom of the disease) Who knows who wanted the divorce or if it was mutual? The mom was diagnosed as the divorce was finalized. I suppose at that point the relationship truly was over. I would hope he tried to help his ex wife when she was losing function.
It says the mother stayed in denial... which means she did nothing to even attempt to control symptoms. She was selfish and irresponsible which started before the kids were even born by refusing to get tested! Her knowledge of this disease would have been way greater then that of her husband's due to his family never experiencing it.
I feel incredibly sorry for the ex-wife. Blamed for mood swings and depression. Dumped and divorced. Deprived of her kids' company, because it was deemed best for the kids. That guy in the blue shirt is completely wrong! Huntington's Disease symptoms can start long before middle age! People are getting symptoms at younger ages--even as young children! People who know that HD is in their family and choose to have children without being tested first are incredibly selfish! Even people who test positive can have IVF, with embryos that are pre-screened for HD.Only HD-free embryos are implanted. The ignorance is bliss and live for today attitude on the part of people who know, but refuse to get tested and then ;have children is horrible. As time goes on, subsequent generations have more repeats of the genetic defect. They get symptoms earlier and earlier. If you doubt it, watch Her Mother's Daughter.
I hope testing is free for all with genetic disorders. Not everyone is like this middle/upper class family in USA that can afford testing. Only education and access to medical drs will prevent more babies being born with Huntingtons.
It says the mother stayed in denial which means she did nothing to even attempt to control her symptoms. That was selfish and irresponsible of HER. Starting with refusing to get tested before having children! Her knowledge of the disease and its potential impact was way greater than that of her husband's.
My step brothers wife put him in a nursing home after he had numerous falls. A couple of months later she divorced him. It's unfortunate, but it happens.
Well that's been said before, probably as mid age is the most common time... unfortunately it can happen at a very young age, and also into old age as well. Which I think, is why sometimes people say it skips generations.. or a person's parents didn't have HD but they did.... The parents may have died before symptoms of hd expressed itself.... And weren't diagnosed for HD.. So it was never known that a parents ever had HD.
OMGosh! What a mature, brave and beautiful woman you are. I am sure that you are probably not aware of the true anxiety you have been able to relieve your parents of in their daily lives. Such an inspiring life story. I can only hope your brother has 'good news' in his future. You inspire people just by being you. Thank-you!
Thank-you so very much for your generous response. I was definitely not judging your Father. I know times have changed and we are more aware of medical issues. Peace to you.
Excellent documentary. You are so talented and brave. Your mom must be so proud of the impact you have made by sharing this awful disease information with others. I have known of 2 acquaintances that have had to deal with this. Heartbreaking and so cruel - knowledge is power. Glad you tested and so very glad you don't have to live that nightmare. Prayers for your brother.
HD is really the most insidious and pervasive of all of the ND conditions. The only way to get rid of it is by genetic preventative measures. It’s tragic.
Thank you for sharing this highly stressful experience with me. I am a better person now because I’ve learned how HD affects people. Thank you for enlightening me. Your a tower of strength. So once again thank you darling . God bless you.congratulations on the outcome of HD even though I don’t know you I am ecstatic about your great news have a wonderful future love take care 🥰🥰🥰🥰🥰👍👍👍👍👍👍🥰🥰🥰🥰
Amazing documentary about a way to often hidden disease. I worked at a nursing home many years ago, and we had 4 siblings there, all with the same symptoms. The elderly parents came every single day as long as I worked there. The mother told me 4 of her 6 children had gotten "the palsy." A term used for any kind of shaking or movement disorder back then. She also said she had helped care for her father, who had died from it. She once said if she had known her children would have suffered the same fate as her father, she would have never had any. But I am not sure in all my years of care I have ever seen a more devoted mother♡
Such a great outcome. Beautiful story. Pain is still there for others. Feel blessed and continue the fight for a cure. It's a horrible experience and hurts everyday. #help4hd #curehd
Most people with Huntington’s disease can be stubbornly in denial..it is the disease not the responsibility, it is part of the problem. I was an RN and I cared for several people with it.
Sorry to hear that that's so sad. One of my friends, it runs in her cousin's wife's family and they decided to have children! She's so worried about them! They knew however, they still had children! Personally, I just went to bring a child into the world knowing how that child might suffer! I feel it is one of the most horrific diseases to mankind! ✌🏼
Not necessarily in Huntington's, some people with this disease sadly go through depression and can become violent or otherwise incapable or caring for children.
There are children being abused starved beat and tortured and I get it if you don't know you have this disease but if you do why bring children into the world to give them a 50% chance of slowly dying a cruel death for God sake
pics on her ig of him looking healthy and no mention of HD. a lot of posts about her parents who are both gone now 😢 (their dad died a couple years after this doc)
Her mom was so selfish getting pregnant without getting tested for HD. What if her children would've gotten HD and they passed away before suffering for years not knowing what was wrong with them. So irresponsible and selfish. I hope the brother doesn't have HD too and I'm happy for Kristen that she doesn't have it. 🙏🏻♥️
I don't think much of Kristen's father. Abandoning his wife when she was sick, whether with Huntington's or MS. No respect for him at all. "In sickness and in health" is sipposed to mean something. And apparently he couldn't take the changes, but he was okay leaving his kids with her? Selfish man.
So inspirational! As a health care provider (ret.) this documentary should be mandatory viewing for medical students!
Everyone is saying the dad abandoned her mom but no... "she stayed in denial" which means she avoided all medication to attempt to control symptoms. As a parent and wife that was very selfish and irresponsible of her. It's easy to say how he should react when you aren't in his shoes.
Great editing Kristen, that was really high quality!
Thank you for the video and the information.
Praise God. I am crying tears of joy!! What a great family. Thank you for sharing your experience with all of us.💥⚡️✨🌟
Inbread white trash
Thank you for this video, Kristen. I am an English teacher, I teach English as a Second Language to adults from all over the world. Your life is featured in a Chapter in one of our textbooks. The goal is to give students practice listening, speaking, reading, and writing about important social issues, for example; whether or not to get genetic testing for disorders and diseases. We used your video to supplement our reading. Thanks to your wonderful work and your courageous decision to be tested for HD, we were able to get a more complete view of all the issues concerning making the decision to get tested. Your experience has helped us all appreciate the topic of genetic testing for disorders and diseases.
Brave Kristen
So pleased all is well with you
Denial causes so much pain and agony
Such a good ending - that is also a beginning.
I do think that if I had a neurodegenerative disease, I’d try to get Death with Dignity before ending up completely incapacitated.
Thank the Lord! I am ecstatic for this young lady!
I was so happy and cried happy tears.
Kristen looks IDENTICAL to her adoptive Mom!!! WOW!!
God Bless your family , you children are powerfully strong in so MENY MENY ways , your mom would be so proud! ❤️🙏🇨🇦
I had happy tears for her.
Hi Kristen, love your documentary, running tears few times during the video. Feel like I was you, and I could tell a bit what you and your family had been through. And I pray for Nate’s negative for HD. Your mommy must looking at you guys from the heaven and protect for you guys. Thank you for your generous and bravery shares!❤
I cried Happy thoughts👍🏽🦋
Very sadly ignorance is not bliss, especially if it effects the lives of the very people that you love the dearest..your children . There are options for creating the healthy family that most couples desire without passing on this or any other nasty gene that will impact the future a child. Life is such a precarious gift without the added misfortune of having this horrific gene passed on to you Kristen and I’m sure it goes without saying that you treasure each day more than most since you dodged that bullet.
I would NEED to get tested. So that I could make reliable plans for my future planned death. No way would I let myself go out in that sort of drawn out misery. I'd enjoy my life to the fullest until my mobility and cognition were clearly at risk, and then I'd be checking the hell out before I got to the point where I couldn't make choices anymore.
You will be the best Doctor sweetie❤️🙏🏻❤️
I just discover this video . Searching due to one of y patient brother have this desease. Don’t no you , however I’m very happy to no that you don’t have it . Thank you to God , Jesus….. every Angel 😇 and Saint…. Crying 😭 of happiness. Congratulations.! Now I hope , your brother get tested. We can’t hide anything that we can do ,let’s do it. Is part of everyone, responsibility that is at risk. I no is scary but , is the only way to find some cure . In the name of God . Thank you 😊 so much for your story. God Bless .
I know your mom did everything from heaven to influence this wonderful negative result. And celebrated with the angels. Praying for the same for your brother weather he decides to be tested prayers this horrible disease ends with your mom for your family.
A happy ending hooray xxxxxx
It's not true that Huntington's is only apparent in middle age. There Juvenile Huntington's which begins in childhood. Huntington's can also start showing symptoms earlier in successive generations.
When I was getting tested the neurologist thought I showed early signs of HD. I think watching my siblings struggle with the disease it literally convinced me I had it. I tested negative and my symptoms subsided. Please if you are worried, consider testing so you don’t go 10 years convinced you have when it could just be the stress of seeing people around you with it.
I am so happy for you that you tested negative, while at the same time my heart goes out for your siblings... ❤️
We must find a cure for this disease from hell.
@@NickanM0p
What symptoms did you have that made the neurologist think that you had the disease
Empathy symptoms
@@cedrastrickland2815whats that mean ?
It’s so wrong, irresponsible, and selfish to adopt the “I don’t wanna know” mentality and deny testing, and then proceed to have children.
I agree with you 100%. I have a friend who's wife had HD. Her family knew about it being in the family and purposely withheld that information from him so she could get married. Many years later, after she died from it, all 3 of their children have it and live in a nursing home. There are 7 grandchildren and some are adamant that they will not find out and are willing to risk passing it onto their children. I do not understand why in the world anyone would fail to be tested when they have witnessed first-hand what their parents are going through. This is one disease that can be irradicated by simply finding out if you have it. If you do, get sterilized. It is cruel and the worst possible child abuse that can be prevented.
@@suestracks Fine, if you dont want to test yourself than I understand. But dont have biologically related children. Use an egg or sperm donor or adopt! Lets eradicate these sort of genetic conditions through responsible family planning.
@@jasminevja8169 Did you read my post? I am the last person on earth that would refuse testing if it was in my family and I think family members owe it to the world to get tested. As I stated, this disease can be eradicated if they got tested and if found to have the gene got themselves sterilized. It upsets me that you responded as you did as you clearly did not read my post. You jumped to some foregone conclusion based on your own perception of what you THOUGHT I wrote. I expect better of people, guess I was wrong. Think before you reply.
@@suestracks when i said you, it wasnt really meant to be directed at any individual in particular.... I have no idea what does or does not run in your family. Anyways, like i said i can understand not wanting to get tested. I understand wanting to just be happy for as long as you can, but what I dont understand is irresponsible family planning. Adoption or egg/sperm donor . It would be even better if they could have it done for free as incentive
@@suestracks I suppose that's a bit ironic considering you sort of did the same. It's the internet, things get misconstrued. It goes both ways
I was crying in anticipation of the news and I am so so happy for her. I'm 17 and the thought of having to go through the death of my mother and have to worry for myself and my brother. She is so resilient and such a badass and she is going to do so many great things
If you know you have a parent with HD and don't want to test there is a way trough IVF where they don't tell if there is HD.
To judge people like i see in some comments does not help and stings me a bit. if you where not in that position, you just don't know how life can go.
Better to give good advice instead of "So wrong irresponsibly and selfish" those comments mostly made by persons not having to deal with it.
I have HD and aborted my son because he had HD, That felt like killing myself. I left my girlfriend for not willing to be burden her. Not everybody is the same and you better try making it a positive advice in stead of judging people for them to understand.
Well said. Sorry to hear of your struggle’s, your doing the best that you can for your loved ones. I hope you still are in contact with your ex.
When I was tested it was beyond scary but I made a decision if I had tested positive I was going to enroll in every single trial I could. The day I got my negative result was sad and happy. I have 7 siblings with HD and four have passed. I had guilt and it felt so unfair to them. My brother was 35 when he passed and his daughter passed at the age of 21 from JHD. My dads HD symptoms were so mild so non of us understood the severity of HD. I just hope we can find a cure soon.
If your Dad knew he had HD I wonder why he had all of the children that he had. And/or wS he not aware he could have it or pass it down. ??
@@giselevallee1224 he had no clue that it was what his mom had. I’m in my late 40’s and when I was 13 we were told it was male dominate. Back then not much was known about HD so it was impossible for him to know he could pass it onto his children.
❤ same here. It's amazing how many idiots armchair critics come rushing out into the comments section having absolutely no freaking experience of living with a family member especially a parent. I am not surprised any longer though at the amount of ignorance posing as outrage. HD is still considered a very very rare genetic disorder. And even though it is one of the most devastating and incurable diseases, there's just not enough people dying from it YET, TO INTEREST BIG GREEDY PHARMA BOYS INTO RESEARCHING IT!
The dementia is what is most devastating to the family and caregivers as well.
So happy for you that you tested negative.
Kristen, you are a very remarkable young lady. Your Dad must be so proud. You will go far in this world. Congratulations for stepping up to the unknown and walking right through it. BRAVO!!!!!
Sue C54 sadly, her dad died of brain cancer after she graduated from Stanford.
@@Budmetro Oh no, that is so sad, on top of everything else. My condolences to her.
Some of these statements are not factual, close friends of mine lost his wife by age 40, his son by age 27 his daughter by age 29‼️ the daughter showed signs in her senior year of high school. So people need to get facts
I agree, there are also juvenile forms of Huntington’s disease.
Very well told...
I was diagnosed with a neurological disease in middle age and went a month with a probable diagnosis of Lou Gerhig’s disease...scary"instead have “orphan” disease ...unknown genetics or future. Every day of life is a gift!
Yes the higher the amount of CAG repeats the younger it presents
It’s a person’s choice not to get tested. HOWEVER that person should NOT have children in fact they SHOULD make the choice to be sterilized. Their personal decision shouldn’t afflict a child who has NO choice.
I understand your point but it’s not as simple as don’t have children. Not everyone can afford the procedure. Accidents happen. If the disease is already progressing, personality changes happen and promiscuity or rape is a possibility. I hope free sterilization is available to anyone with a genetic mutation or who chooses not to have children. Doubtful tho.
It doesnt only arise at age 40-50...theres juvenile onset. I believe that noone should be able to knowingly inflict this risk on innocent children. It is grossly unfair, takes decades of caregivers lives, inflicts years of suffering. I understand fully the rights of the individual to choose, but what about the rights of the children, and unknowing spouses? Is it legal to knowingly choose to torture and murder someone? Children dont deserve that, and now we have the science to test, there is no excuse good enough to justify the damage.
@Annie497 Earliest I've heard of was a 2 yr old child.
I did not expect to cry at the “good news” result. I was terrified when I saw four chairs, as in “brace yourselves”. I pray your brother is negative too. And my hope is that your mama is looking down with joy.
The brother should have registered for HD while he was there with his sister! This was when Denialitice kicked in !
@@chairlesnicol672You can‘t get tested as a minor, which he was at that stage
@@alicethomas6375That I never knew,Thnx!
I watched my step brother struggle with this and die at the age of 51. He did have testing and was diagnosed in his early 30's. His mom died with it when he was 20. It has ravaged his family on his mom's side. I never understood why he chose to have a child or why his child in turn has chosen to have 3 of her own. That's selfish and irresponsible.
It should be against the law.
@Annie497 your comment literally made my stomach drop. That is absolutely awful that those parents chose to have children naturally knowing those odds and what they would be subjecting their children too, and that the children ended up indeed inheriting the dreadful diseases. So sad. I honestly cannot fathom it, especially with all the options there are available right now for family planning like pre- implantation genetic testing (PGT) for these genetic disorders, adoption or fostering.
Accidents or spousal rape happens. Should the mother abort? Ultimately Sterilization costs money and many countries would not pay for it.
the gene wasn't discovered until 1993. some people just didn't understand that it was hereditary and the chances of a child having it.
Inbread white trash
So I don’t have kids cus I’m autistic and hard to live with but these folks go ahead and have children no worries? How can you possibly do that to a loved one. These people smh
It's unbelievable. Especially now when many people who has the HD gene is using embryo screening, and implanting a healthy embryo via IVF, so they'll have a 100% HD free child. And in my country, that medical service is FREE if you carry a genetic disorder. They can't hide from the hard truth, they only make it worse...
I am also autistic, and am the same
Back when they got their first kid they didn't know she was sick.
I have autism and a chronic illness. That's the reason I don't wanna have kids.
kristen seems like an amazing girl, i don't have huntingtons in my family but she has inspired me with her attitude to such a daunting situation and life in general (: so glad she tested negative i'm sure she'll give a lot to the world
Thank you so much for sharing your story with us, Kristen. I'm studying to be a genetic counsellor and learning about personal and family experiences of disease is invaluable, especially around a disease that can be so devastating. This is an amazing documentary and I will definitely be sending it onto my coursemates to watch. You are so brave.
Kristen is extraordinary,intelligent and brave
Thank for posting this touching and informative documentary❤
Wishing her the best success
Tears of joy when it was revealed that kristen tested negative
I have Neurofibromatosis. 50/50 I would pass it to my children. No kids. Why would someone flip the coin. Cruel
I also have NF. Mildly impacted, and live life as normal but since I know my children can be severely impacted then I am choosing not to have bio children either and plan to adopt. I hope you are doing well!!
@@Mountainhaze9090 You too
Huntington's disease has to be the worst disease ever! It's like having Alzheimer's/Lou Gehrig's disease/Parkinson's disease and having schizophrenia at the same time!
No not exactly like the other conditions No. Quite different in fact.
Just imagine how hard it would be for the doctor to break the news and tell everybody she tested positive.
Many kinds of doctors have to convey bad news very often. I’m sure it’s not easy, but it’s not uncommon, unfortunately.
I was moved by your careful sharing of your story, your family members' stories, and others, knitted with clear information as well as careful awareness-building. Thank you so much for your sharing and fabulous filmmaking
You are a strong dynamic person Kristen. Take the world by storm!
Nothing like being abandoned when your on your way out!!! The husband should have stayed even as just a loving friend. You were in love at one time, you shared two children together for Pete's sake! I understand that when your ex wife was no longer aware of her surroundings, and unable to function at all on her own. Thankfully your daughter was tested negative, thank you Jesus 🙏🙏🙏
I guess Jesus didn’t care about Nikki or all the other people who suffer from HD and so many other horrible diseases.
And I believe Kristin’s parents split before Nikki was diagnosed.
Your words about abandoning Kristen’s mother echo my thoughts exactly. No respect for partners that bail as soon as things get difficult. What happened to actually honoring marriage vows- “for better, for worse, in sickness and in health.”
I initially felt the same way but heard the mom’s behaviour was getting out of control (symptom of the disease) Who knows who wanted the divorce or if it was mutual? The mom was diagnosed as the divorce was finalized. I suppose at that point the relationship truly was over. I would hope he tried to help his ex wife when she was losing function.
If I understood correctly, they separated when the daughter was 5, before symptoms started. So it wasn’t like he jetted out after finding out.
It says the mother stayed in denial... which means she did nothing to even attempt to control symptoms. She was selfish and irresponsible which started before the kids were even born by refusing to get tested! Her knowledge of this disease would have been way greater then that of her husband's due to his family never experiencing it.
May god be with all those with Huntington’s Disease.
I feel incredibly sorry for the ex-wife. Blamed for mood swings and depression. Dumped and divorced. Deprived of her kids' company, because it was deemed best for the kids. That guy in the blue shirt is completely wrong! Huntington's Disease symptoms can start long before middle age! People are getting symptoms at younger ages--even as young children! People who know that HD is in their family and choose to have children without being tested first are incredibly selfish! Even people who test positive can have IVF, with embryos that are pre-screened for HD.Only HD-free embryos are implanted. The ignorance is bliss and live for today attitude on the part of people who know, but refuse to get tested and then ;have children is horrible. As time goes on, subsequent generations have more repeats of the genetic defect. They get symptoms earlier and earlier. If you doubt it, watch Her Mother's Daughter.
I hope testing is free for all with genetic disorders. Not everyone is like this middle/upper class family in USA that can afford testing. Only education and access to medical drs will prevent more babies being born with Huntingtons.
It says the mother stayed in denial which means she did nothing to even attempt to control her symptoms. That was selfish and irresponsible of HER. Starting with refusing to get tested before having children! Her knowledge of the disease and its potential impact was way greater than that of her husband's.
The parents divorced when she was already clearly ill?? Leaving her like that?
No. They divorced prior to her diagnosis. Watch the video again.
My step brothers wife put him in a nursing home after he had numerous falls. A couple of months later she divorced him. It's unfortunate, but it happens.
This is real life.unfortunately it happens.
So Kirsten’s father divorced her mother, when her mother became ill? Did I miss something? Surely not. He wouldn’t be in this if that was the case.
I cried for her when she got her results, and I dont even know her. Now she can have kids and a whole life. Thank you God for your blessings.
It's wonderful that she's negative, but now her brother needs to also get tested to get the all clear also.
I know...he is still on my mind...he reminds me so much of my dear grandson..my heart aches for him . He is in my prayers from now on.
Why would that neurologist say HD only arises in middle age? WOW.
There are two year olds three-year olds that get Huntington's disease as well! So sad...
Well that's been said before, probably as mid age is the most common time... unfortunately it can happen at a very young age, and also into old age as well.
Which I think, is why sometimes people say it skips generations.. or a person's parents didn't have HD but they did....
The parents may have died before symptoms of hd expressed itself.... And weren't diagnosed for HD..
So it was never known that a parents ever had HD.
Awsome news good luck Kristen 😊 for the future .from Australia 🇦🇺
OMGosh! What a mature, brave and beautiful woman you are. I am sure that you are probably not aware of the true anxiety you have been able to relieve your parents of in their daily lives. Such an inspiring life story. I can only hope your brother has 'good news' in his future. You inspire people just by being you. Thank-you!
Thank-you so very much for your generous response. I was definitely not judging your Father. I know times have changed and we are more aware of medical issues. Peace to you.
Wow!!! So happy for you and your family!
Excellent documentary. You are so talented and brave. Your mom must be so proud of the impact you have made by sharing this awful disease information with others. I have known of 2 acquaintances that have had to deal with this. Heartbreaking and so cruel - knowledge is power. Glad you tested and so very glad you don't have to live that nightmare. Prayers for your brother.
watch the video play speed 1.5
HD is really the most insidious and pervasive of all of the ND conditions. The only way to get rid of it is by genetic preventative measures. It’s tragic.
I remember doing the same neurological tests when I found out I had a brain tumor so this was a throwback for me.
Someone commented about 'ex' ... They didn't know she had it when they separated. She was just angry and hard to live with.
Now her brother will need to be tested 🤔😟🇦🇺
Only if he wants to know.
Why were these children not with their father?
Thank you for sharing this highly stressful experience with me. I am a better person now because I’ve learned how HD affects people. Thank you for enlightening me. Your a tower of strength. So once again thank you darling . God bless you.congratulations on the outcome of HD even though I don’t know you I am ecstatic about your great news have a wonderful future love take care 🥰🥰🥰🥰🥰👍👍👍👍👍👍🥰🥰🥰🥰
Turn the damn gene off on Chromosome 4
I'm so happy for this family, I've never heard of this disease until I came across this video.
Great that you have become aware of Huntington disease.
I hate that her husband bailed when she was getting sick
Amazing documentary about a way to often hidden disease. I worked at a nursing home many years ago, and we had 4 siblings there, all with the same symptoms. The elderly parents came every single day as long as I worked there. The mother told me 4 of her 6 children had gotten "the palsy." A term used for any kind of shaking or movement disorder back then. She also said she had helped care for her father, who had died from it. She once said if she had known her children would have suffered the same fate as her father, she would have never had any. But I am not sure in all my years of care I have ever seen a more devoted mother♡
" The palsy ". I've never heard that before to discribe HD..
I wonder what year that was ? 🤔
An amazing young person. 💖
good luck young lady......great outcome
It is not selfishness.
Thank. God 🙏
Such a great outcome. Beautiful story. Pain is still there for others. Feel blessed and continue the fight for a cure. It's a horrible experience and hurts everyday. #help4hd #curehd
Excellent production on such a gut-wrenching experience and unknown life-expectancy.
TY for sharing.
Most people with Huntington’s disease can be stubbornly in denial..it is the disease not the responsibility, it is part of the problem. I was an RN and I cared for several people with it.
Kristen, You are just a astounding young Lady.God bless Youin all You do in Your life, and thank The Lord ! The video was just incredible.
My step nephew was diagnosed at age 25 both his kids tested positive
😥
Sorry to hear that that's so sad. One of my friends, it runs in her cousin's wife's family and they decided to have children! She's so worried about them! They knew however, they still had children! Personally, I just went to bring a child into the world knowing how that child might suffer! I feel it is one of the most horrific diseases to mankind! ✌🏼
Good news!
Your very lucky that you have good kind and caring loving friends and family there for you God Bless all of those wonderful great humans 😊❤
just seeing this & did a search for her brother, to find out her dad died of terminal brain cancer a couple years after this documentary 😢 😢😢
"ex-wife" !! 😔
I understand the desire to have children but fostering and adoption may be a good option instead of having biological children.
Not necessarily in Huntington's, some people with this disease sadly go through depression and can become violent or otherwise incapable or caring for children.
People at risk or with the disease can't adopt.
Only way to stamp out disease is to adopt
So happy for Kristin's test results!❤🎉❤
Good girl caring for your brother bless you have a happy disease free life I am so happy for you darling xx
I'm so happy for you❤️Praise the Lord 🙌🙌🙌🙌
The dance off in the car was my favorite part. Align your stars.
Wath the men! he let her dan and ask for divorce
Yah!🙏😊
Would love to see Kristen as a content creator.
There are children being abused starved beat and tortured and I get it if you don't know you have this disease but if you do why bring children into the world to give them a 50% chance of slowly dying a cruel death for God sake
Did her brother get tested.
So glad for the you!❤️
Would be interesting to know if her brother has tested yet.
pics on her ig of him looking healthy and no mention of HD. a lot of posts about her parents who are both gone now 😢 (their dad died a couple years after this doc)
This is what Chloe on Neighbours is going through
Thank God!!!!!!!
That's a relief.
YAY❤
You have to get tested, period.
🙄
So very very happy for you
Her mom was so selfish getting pregnant without getting tested for HD. What if her children would've gotten HD and they passed away before suffering for years not knowing what was wrong with them. So irresponsible and selfish. I hope the brother doesn't have HD too and I'm happy for Kristen that she doesn't have it. 🙏🏻♥️
🙄
Yeeeeh
Please stopped the background music!
I don't think much of Kristen's father. Abandoning his wife when she was sick, whether with Huntington's or MS. No respect for him at all. "In sickness and in health" is sipposed to mean something. And apparently he couldn't take the changes, but he was okay leaving his kids with her? Selfish man.
Were there married ?
Fantastic!!!
GAAAAAAAAAA