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.
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.
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.
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 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!!!!!
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
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.
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.
I feel the same way.....as a mother of two, I can't imagine bringing them into the world knowing they will be behind the 8 ball. Unfair and so selfish. I saw documentaries on some of these situations, and I was angry at the parents! One woman had suffered from a genetic form of retinoblastoma, and had gone through hell over the years with surgeries and chemo. I was shocked when they decided they still wanted to have a family! They gave birth to twin boys and BOTH developed the disease. As soon as they were born, doctors were able to examine their eyes and see "seeds" of the disease which would grown into cancer. This disease often ends up with having surgery to remove the eye, itself. Watching these two little boys go through surgery and radiation and chemo, I wondered how these people could have knowingly put their children through such horror! The other case that stands out to me is the case where the first child born to a couple had an horrific skin disorder, which involved torturous treatments of scrubbing excess skin cells off by taking long baths. Then covering the child with a cream to prevent infections from setting in. There was no cure, and caused high levels of pain every day of the girl's life! They did not know about the disease until after her birth, BUT they learned it was a hereditary condition. Watching the quality of their child's life made me cry. Then they decided to have another child, essentially playing russian roulette. The second child, another girl, had inherited the same disease! It was heartbreaking, listening to the girls talk. The little one said that her big sister sharing the same disease helped her to be brave during the painful skin treatments. The older girl, I think around 14.....was pondering if she'd ever have the chance to date. How these people could willingly reproduce, knowing what they could pass along, was beyond comprehension to me. Awful.
@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.
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
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
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!
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.
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.
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
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.
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
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♡
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.
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.
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 🥰🥰🥰🥰🥰👍👍👍👍👍👍🥰🥰🥰🥰
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.
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...
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.
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.
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.
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.
I seenChris’s mom inTHE videos for a moment, I seen his documentary, I wander how he is doing ? God Bless you all may the hand of our father Lord God be placed on you all for peace , courage ,understanding, May you find the love that the Lord has for you , learn all about Jesus while he was on earth , be a part of him but importantly give your live to him, praise worship ourLord ,and feel his powers apon your life ,the most beautiful amazing feeling ! Learn all you can about him , THATS how you’ll love him ! God be with you all on your journey! ❤️🙏♥️🇨🇦
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 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!!
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.
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 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.
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 .
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)
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! ✌🏼
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.
The father says what can you do today? The same thing he did before Nothing, wow what kind of person would not stay with his wife as a friend just to be abandoned must have been painfull.
No! Family planning can still be done! These young people do not need to have children that our biologically theirs. They can have children via egg and sperm donors. They can also adopt. These children are forced to be care givers for their parents and constantly living with a reminder of what has a strong chance of being their own fate!
They also can still have biological children! They can do PGD (preimplantation genetic testing) on embryos and then only implant those that are negative.
A couple with a family history of HD are unlikely to be given the option of adoption. It’s not right to burden adopted children with the care of a very ill HD parent when there are not enough children available for adoption.
Not everyone has the money for all these procedures. Not everyone is wealthy or lives in a country that these measures can be taken. We all want a perfect world with healthy babies but, this is not going to be possible. Judging young people with genetic mutations does not help.
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.
They can't, because they've discovered through testing, that the gene is somehow vital to development, but they aren't sure how. They tried eliminating this in mice, and they could not grow and maintain life. The key will be to find out why these sequences have so many repeats in people that are affected. If they can shut down mechanism which causes the sequences to repeat out of control, they will make huge progress.
Thank Goodness you were tested and your results were negative. You have too much to do in the world. I hope your brother gets tested. Did one of your grandparents have HD? Something that bothered me from the beginning was your parents divorce. It’s not my business but i’ll comment anyway because I don’t think it’s right? We’re you angry that your parents divorced? Our vows are for better or worse. This is definitely worse. I don’t know if I could divorce my sick partner. If feel it’s my duty to protect her and see it through. I wondered how you and your brother felt? How did your mother’s parents, siblings and relatives feel? I know it was hard. Darling I wish you and your brother well. May you both live a long and healthy life filled with love and friendships. God bless you and your family. ❤
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. 🙏🏻♥️
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 ?
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.
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 !
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 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.
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
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.
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.
So inspirational! As a health care provider (ret.) this documentary should be mandatory viewing for medical students!
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.
I feel the same way.....as a mother of two, I can't imagine bringing them into the world knowing they will be behind the 8 ball. Unfair and so selfish. I saw documentaries on some of these situations, and I was angry at the parents! One woman had suffered from a genetic form of retinoblastoma, and had gone through hell over the years with surgeries and chemo. I was shocked when they decided they still wanted to have a family! They gave birth to twin boys and BOTH developed the disease. As soon as they were born, doctors were able to examine their eyes and see "seeds" of the disease which would grown into cancer. This disease often ends up with having surgery to remove the eye, itself. Watching these two little boys go through surgery and radiation and chemo, I wondered how these people could have knowingly put their children through such horror! The other case that stands out to me is the case where the first child born to a couple had an horrific skin disorder, which involved torturous treatments of scrubbing excess skin cells off by taking long baths. Then covering the child with a cream to prevent infections from setting in. There was no cure, and caused high levels of pain every day of the girl's life! They did not know about the disease until after her birth, BUT they learned it was a hereditary condition. Watching the quality of their child's life made me cry. Then they decided to have another child, essentially playing russian roulette. The second child, another girl, had inherited the same disease! It was heartbreaking, listening to the girls talk. The little one said that her big sister sharing the same disease helped her to be brave during the painful skin treatments. The older girl, I think around 14.....was pondering if she'd ever have the chance to date. How these people could willingly reproduce, knowing what they could pass along, was beyond comprehension to me. Awful.
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.
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
You are a strong dynamic person Kristen. Take the world by storm!
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.
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
May god be with all those with Huntington’s Disease.
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
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.
Great editing Kristen, that was really high quality!
Thank you for the video and the information.
Brave Kristen
So pleased all is well with you
Denial causes so much pain and agony
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.
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
Wow!!! So happy for you and your family!
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
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.
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 had happy tears for her.
Thank the Lord! I am ecstatic for this young lady!
So glad for the you!❤️
Awsome news good luck Kristen 😊 for the future .from Australia 🇦🇺
An amazing young person. 💖
Fantastic!!!
I remember doing the same neurological tests when I found out I had a brain tumor so this was a throwback for me.
I was so happy and cried happy tears.
Kristen looks IDENTICAL to her adoptive Mom!!! WOW!!
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.
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♡
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.
I'm so happy for this family, I've never heard of this disease until I came across this video.
I cried Happy thoughts👍🏽🦋
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.
Agree....it's less common, but can be diagnosed as young as teens or as old as 70's. The average age on onset is 40, but not every person is average.
@@Annie497 Earliest I've heard of was a 2 yr old child.
God Bless your family , you children are powerfully strong in so MENY MENY ways , your mom would be so proud! ❤️🙏🇨🇦
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 🥰🥰🥰🥰🥰👍👍👍👍👍👍🥰🥰🥰🥰
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.
So very very happy for you
good luck young lady......great outcome
I'm so happy for you❤️Praise the Lord 🙌🙌🙌🙌
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
That's a relief.
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.
Someone commented about 'ex' ... They didn't know she had it when they separated. She was just angry and hard to live with.
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!❤
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.
The dance off in the car was my favorite part. Align your stars.
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.
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 😊❤
Good girl caring for your brother bless you have a happy disease free life I am so happy for you darling xx
Thank God!!!!!!!
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.
Yah!🙏😊
watch the video play speed 1.5
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.
I seenChris’s mom inTHE videos for a moment, I seen his documentary, I wander how he is doing ? God Bless you all may the hand of our father Lord God be placed on you all for peace , courage ,understanding, May you find the love that the Lord has for you , learn all about Jesus while he was on earth , be a part of him but importantly give your live to him, praise worship ourLord ,and feel his powers apon your life ,the most beautiful amazing feeling ! Learn all you can about him , THATS how you’ll love him ! God be with you all on your journey! ❤️🙏♥️🇨🇦
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!
Would love to see Kristen as a content creator.
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!!
@@joriehoffrage9745 You too
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.
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.
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 😢 😢😢
You will be the best Doctor sweetie❤️🙏🏻❤️
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.
Why were these children not with their father?
Did her brother get tested.
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.
Now her brother will need to be tested 🤔😟🇦🇺
Only if he wants to know.
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 .
This is what Chloe on Neighbours is going through
Good news!
YAY❤
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)
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...
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! ✌🏼
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.
❤️❤️❤️
The father says what can you do today? The same thing he did before Nothing, wow what kind of person would not stay with his wife as a friend just to be abandoned must have been painfull.
She is a spitting image of her Mom ❤️
You have to get tested, period.
A happy ending hooray xxxxxx
Yeeeeh
It is not selfishness.
Her poor Mum died alone. 😢
She's very brave I wouldn't want to know that's sooooooo scary
No! Family planning can still be done! These young people do not need to have children that our biologically theirs. They can have children via egg and sperm donors. They can also adopt. These children are forced to be care givers for their parents and constantly living with a reminder of what has a strong chance of being their own fate!
They also can still have biological children! They can do PGD (preimplantation genetic testing) on embryos and then only implant those that are negative.
Many w/ HD choose invitro...
A couple with a family history of HD are unlikely to be given the option of adoption. It’s not right to burden adopted children with the care of a very ill HD parent when there are not enough children available for adoption.
Not everyone has the money for all these procedures. Not everyone is wealthy or lives in a country that these measures can be taken. We all want a perfect world with healthy babies but, this is not going to be possible. Judging young people with genetic mutations does not help.
I hate that her husband bailed when she was getting sick
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
"ex-wife" !! 😔
Turn the damn gene off on Chromosome 4
They can't, because they've discovered through testing, that the gene is somehow vital to development, but they aren't sure how. They tried eliminating this in mice, and they could not grow and maintain life. The key will be to find out why these sequences have so many repeats in people that are affected. If they can shut down mechanism which causes the sequences to repeat out of control, they will make huge progress.
Thank Goodness you were tested and your results were negative. You have too much to do in the world. I hope your brother gets tested. Did one of your grandparents have HD?
Something that bothered me from the beginning was your parents divorce. It’s not my business but i’ll comment anyway because I don’t think it’s right? We’re you angry that your parents divorced? Our vows are for better or worse. This is definitely worse. I don’t know if I could divorce my sick partner. If feel it’s my duty to protect her and see it through. I wondered how you and your brother felt? How did your mother’s parents, siblings and relatives feel? I know it was hard.
Darling I wish you and your brother well. May you both live a long and healthy life filled with love and friendships. God bless you and your family. ❤
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. 🙏🏻♥️
Good news 😊