Living with Huntington’s disease
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- Опубликовано: 2 июл 2020
- ABC News’ Linsey Davis follows two families grappling with the rare genetic disorder Huntington’s disease, compared to ALS, Parkinson’s disease and Alzheimer's disease all in one.
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It's great to see ABC doing a video on families with Huntington's disease; a rare, fatal, genetic brain disorder that affects adults and children that has NO CURE. I lost my three sisters-in-law and mother-in-law to this horrific disease. My family is blessed as my husband, John, tested negative for the mutated huntingtin gene that causes the disease. Since John doesn't have the mutated gene, our children are not at risk.
Losing all siblings, niece. Father had gene. Very sad watching them deteriorate. 💔
My mother had Huntington's disease. My father was in denial; I cared for her until she died at age 41.
I was 18 years old. My younger sister had it too, she also died at age 41. My youngest brother too had HD, gone at only 35 years on earth. Now, my younger brother is still battling this horrific disease for 25 years. At 53 he's still holding on with the care of his very patient, patient wife. They have 3 teenage girls who have the 50/50 chance of having HD. I always pray for my beautiful and smart nieces; I wonder what thoughts pass their minds 🤔 at night when they go to sleep...
I got the official diagnosis yesterday
@@MrMackmack5778I understand it’s 2 months down the road, but as a stranger on the internet who just happened past your comment: I wish all the peace joy and happiness in your life, I hope everything you dream about comes true.
@youarewrong5523 I am going to adopt while I still can so I have something to leave behind in hopes that they will have a better life
Social security denying him disability is total bullshit!!!
After being formally diagnosed, he'll get it.
I’ve nursed a guy with Huntington disease, it’s an evil horrid, nightmare affliction.
Do anyone still doubt natural herbs? I've seen the great importance of natural herbs and the wonderful work they have done in people's lives. I wonder why people still spend their money on surgery, injections and drugs each time they are sick. Natural herbs can cure all kinds of illness including herpes, diabetics, asthma, Cancer, hepatitis, etc. I've seen it with my own eyes. I was cured of Huntington disease and my Sister and her Husband were cured of herpes by dr Osemuahu who uses natural herbs to cure different kind of illness. Even Dr. Osemuahu proved to the whole world that natural herbs can cure all diseases and he cured countless of people using natural herbs. I know is hard to believe but am a living testimony. There is no harm in trying herbs. Contact Dr Osemuahu(whatsap no): +2349050925421 or email: dr.o.osemuahu@gmail.com
It's a horrible nightmare,we had no idea what my dad had at the time,the whole family ,alit going on AIDS etc my father in one hospital my brother in another, nightmare
@@annmariechinn106 Sending you huge tight hugs.
@@catalinacurio thank u I needed that! ☺️
@@magreetendason4223 the only herb to work is weed, the rest you cook with
My mother died in 2017 from a stroke and also suffered from Huntington’s disease which got worse later in her 60s and 70. My sister went for the test and tested negative, my brother got tested and he is unfortunately positive with it. I choose not to get tested because that is my choice. Thankyou for showing this ABC and hopefully America has a better health insurance to deal with genetic diseases.
I remember a mother with two sons had Huntington Choera in Georgia. She did everything to take care of her sons. It's here on RUclips and ended tragically.
Twin boys, if I remember correctly. Unbelievably sad.
My left ear enjoyed this video
Sandy Allen wow what an insult that hurt so much omg wiw
I literally thought my right wireless earbud stopped working until I saw this. Thanks
two inspiring families that shared their stories.... I sure hope "we" get to follow their stories going forward!
I am so distressed reading the comments. This disease is a slow painful death. You have constant movements that you have no control of. I am 72. My great grandmother died from this and it has now gone on kill my generation and the next 2. My mom was one of 6 girls, 3 got HD and since my mother did not get it, I won't. I had a cousin who jumped off a bridge to avoid living with it. Please if you make comments be on topic and show compassion.
Do anyone still doubt natural herbs? I've seen the great importance of natural herbs and the wonderful work they have done in people's lives. I wonder why people still spend their money on surgery, injections and drugs each time they are sick. Natural herbs can cure all kinds of illness including herpes, diabetics, asthma, Cancer, hepatitis, etc. I've seen it with my own eyes. I was cured of ulcerative colitis and my Sister and her Husband were cured of herpes by dr Osemuahu who uses natural herbs to cure different kind of illness. Even Dr. Osemuahu proved to the whole world that natural herbs can cure all diseases and he cured countless of people using natural herbs. I know is hard to believe but am a living testimony. There is no harm in trying herbs. Contact Dr Osemuahu(whatsap no): +2349050925421 or email: dr.o.osemuahu@gmail.com
Why kind of comments are you looking for? I am the husband to a wife with HD and have taken care of my father in law through it.
@@Qstudioz1 I am looking for comments from people that have it or take care of it. I would like to know where people are located. Is it just in the us or all over the world. I make donations to Huntington for research. Seeing people with hd breaks my heart. Did I answer your question.
I'm in the US
@@sandymathews2664 Had a patient with HD - UK
My paternal grandfather and uncle died of Huntington's. Thank you for this segment, it showed me that I need to get tested and have my adult kids get tested.
Sorry to hear that, I hope everything is ok for you.
Do anyone still doubt natural herbs? I've seen the great importance of natural herbs and the wonderful work they have done in people's lives. I wonder why people still spend their money on surgery, injections and drugs each time they are sick. Natural herbs can cure all kinds of illness including herpes, diabetics, asthma, Cancer, hepatitis, etc. I've seen it with my own eyes. I was cured of Huntington disease and my Sister and her Husband were cured of herpes by dr Osemuahu who uses natural herbs to cure different kind of illness. Even Dr. Osemuahu proved to the whole world that natural herbs can cure all diseases and he cured countless of people using natural herbs. I know is hard to believe but am a living testimony. There is no harm in trying herbs. Contact Dr Osemuahu(whatsap no): +2349050925421 or email: dr.o.osemuahu@gmail.com
My fiancé’s father has Huntington’s. He could have Huntington’s. We’re going to get him tested in the next couple months to really see what’s going on with him. He’s been having difficulties with memory and focus, as well as several other symptoms related to Huntington’s. Hopefully the wait will prove he’s negative. I can’t imagine spending a single waking moment of my life without him.
How did the test go?
The richest country in the world and we don’t have Medicare for all?
Those with HD are eligable for social security
@@Qstudioz1 but that doesn’t guarantee healthcare. Social security benefits haven’t been raised in decades and Medicare is getting chopped up to where therapy services are limited to months. Not a good system no matter how you slice it.
You don't become the richest country by being the nicest country.
It was simply heart breaking to witness Justin's positive diagnosis, my younger brother Sam started to manifest chorea around 2018, and is now a permanent patient in the Sue Ryder brainkind neurological care centre near Hitchin. Our Father Peter also had H.D. and sadly passed away aged only 51. My heart goes out to all sufferers and families who are going through the truly unbearable trauma and heartache caused by this wicked devastating disease.
Raise awareness!
That's all we can, so many of us HD families suffer in silence and rage.
Prayers for these young people ❤️🙏
I'm glad our struggle is finally going main stream.
STAY STRONG LOVE EVERYONE AFFECTED BY THIS DISEASE!
Ty
My husband has it. Hes between mid to late stages. We had no idea what it was. Seriously the most devastating disease none to man.
Same with my wife, we knew what ot was though because we cared for my father in law before he passed. Im caring for my wife now she got the onset at 32 and is now 40 and disabled.
Omg my heart goes out to you stay strong and love each other
That and schizophrenia
My Dad's cousins lived and died with Huntingtons. I went to my doctor to see if I could get it and she told me no, my Dad couldn't pass it on to us.
Being a genealogist though, I've been learning so much about my relatives who have suffered from this.
Ethical debate of using genetic testing on the embryos? I think the unethical thing would be having children giving them a 50/50 chance of having a child with Huntington's!
People tend to be very selfish. Kelsey doesn't care that her children might inherit the horrible disease.
We should have universal healthcare. No one should have to deal with trying to find coverage while they are dealing with poor health. Devastating health! People should just be able to focus on how to manage their health and not have to worry about also bankrupting their families.
Its genetic in my mom's side of the family. Im having a test for it soon. It won't be in my lifetime but I hope they find a cure or a better way of treating it
Huntington’s has torn its way through my family, I’ve lost many to it including my father.
Im 20 years old myself and it has had a hold over me almost every day of my life and sometimes the fear I may have it myself truly consumes me.
I have yet to get tested and I honestly don’t know how to approach the whole subject and I don’t know if I have the guts to do it yet, I know this may seem ignorant but I’m afraid I will loose myself if this happens to be my fate.
I need to be around for my family and I will do anything to assure this, I want to meet my children one day.
I really hope that this field of medicine makes some progress, the lack of conversation regarding the topic is nerve racking none the less.
To anyone else that may share my fear just know you are not alone, it is terrifying but it is a means to live your life with the greatest sense of purpose.
P.S. Any input good or bad or anyone else who may have there own story to share is more than welcome, we’re truly all in this together.
my dad has huntingtons, he was diagnosed when i was 6 or 7, i don’t remember much of my childhood with him only when he started processing his symptoms he would get angry and that was all i remember. he’s in a care home now but i still have the 50/50 chance of getting it. it’s the biggest impact thats ever happened to me. not having an emotionally invested father is the hardest thing ever
my dad has huntingtons, he was diagnosed when i was 6 or 7, i don’t remember much of my childhood with him only when he started processing his symptoms he would get angry and that was all i remember. he’s in a care home now but i still have the 50/50 chance of getting it. it’s the biggest impact thats ever happened to me. not having an emotionally invested father i love him so much and i know he does too :(
My daughter is 9 and her dad has it and he has changed 4 sure he has 2 other daughters and they help me with my daughter cause her dad can only be around her 4 a few hours cause he gets mad...my daughter always loves being around him n he loves being around her....
If the mechanism that causes HD is inadvertent methylation of cytosines in CAG triplets, followed by spontaneous de-amination of said cytosines, converting them in thymine, the codon encoding glutamine (CAG) would be replaced by a stop codon ( TAG ). If my hypothesis is correct, perhaps decitabine and other inhibitors of methyltransferase could slow down the onset of HD.
We must give money to science. We must make progress.
Read my reply above.
This HD family is. Look up the Bev Hartig HD Charity
My great grandfather died of Huntington’s Disease. He was in his early 30’s.
How sad 😢
Maddy young this was roughly in the mid 30’s. I would have thought by now there would be treatments to cure this.
Do anyone still doubt natural herbs? I've seen the great importance of natural herbs and the wonderful work they have done in people's lives. I wonder why people still spend their money on surgery, injections and drugs each time they are sick. Natural herbs can cure all kinds of illness including herpes, diabetics, asthma, Cancer, hepatitis, etc. I've seen it with my own eyes. I was cured of Huntington disease and my Sister and her Husband were cured of herpes by dr Osemuahu who uses natural herbs to cure different kind of illness. Even Dr. Osemuahu proved to the whole world that natural herbs can cure all diseases and he cured countless of people using natural herbs. I know is hard to believe but am a living testimony. There is no harm in trying herbs. Contact Dr Osemuahu(whatsap no): +2349050925421 or email: dr.o.osemuahu@gmail.com
Thank you for bravely sharing your story with the world. Knowledge is power. God Bless you all!
I have HD it breaks my heart
Hope you're doing OK
I was diagnosed with HD two years ago. It’s a very lonely disease.
My mom has this. It killed my grandma
Our government is horrible. I feel for them.
@Sandy Allen Government is bought and paid for by insurance companies
I have HD too
My wife does too, you hang in there.
And my dad had it, stay strong
Isn’t this the guy from the movie Ginny and Georgia?
So Sad.😔
I’ve nursed a few. Very Sad. 🌹
Thank you for helping our community
What state do they live in where they got tested
Does Covid cause to dream a lot? Cuz I been having dreams everytime I go to sleep and sometimes have multiple dreams in one sleep.
Are we ok with how insurance works in the is country? Maybe there is a bill being proposed that improves it where we can call our senators to support? Or what Non profit Orgs are fighting for improving the system? I don't know the solutions but let's not keep doing the same thing and expected a different result. I think we can take incremental change, if something doesn't work, take a step back and change.
Why is the sound only to the left earphone?? Sks
My mom n sister has hunington n my moms sister passed from it at 52.... I have the symptoms but scared to get tested 😢
My brother was the first diagnosed kid with juvenile Huntington’s diesease
That's the worse I'm so sorry
Problem with audio
This makes me wonder if I'm actually related to these 2 families then, I was born in Texas and it is genetic and it doesn't just manifest itself
I wish US can have insurance like Canada have =(
I took care of a couple patients with huntingtons disease. Its an awful disease
Do anyone still doubt natural herbs? I've seen the great importance of natural herbs and the wonderful work they have done in people's lives. I wonder why people still spend their money on surgery, injections and drugs each time they are sick. Natural herbs can cure all kinds of illness including herpes, diabetics, asthma, Cancer, hepatitis, etc. I've seen it with my own eyes. I was cured of Huntington disease and my Sister and her Husband were cured of herpes by dr Osemuahu who uses natural herbs to cure different kind of illness. Even Dr. Osemuahu proved to the whole world that natural herbs can cure all diseases and he cured countless of people using natural herbs. I know is hard to believe but am a living testimony. There is no harm in trying herbs. Contact Dr Osemuahu(whatsap no): +2349050925421 or email: dr.o.osemuahu@gmail.com
@@magreetendason4223 Natural herbs wont do anything
@@biasedjedi4353 natural herbs is the best I’ll recommend you to use it
@@magreetendason4223 I have scleroderma and I’ve used natural herbs, and they have done nothing for me. Modern medicine has though.
@@biasedjedi4353 but I'm letting you know that this herbs will work perfectly fine so give it a try and you'll come and thank me later.
Folks don't just live with Huntington's Disease; they die from it (very grim). Audience wishes hapless victims all the best. Cheers!
GOD BLESS ALL UNITED STATE'S MARINE'S, MILITARY, AIR FORCE'S, U.S.S...TO SAVE ALL HUMAN'S WORLD WIDE..💐🏩🇺🇸🌎🌍🌏🇺🇸🕌🇬🇧🌖🇫🇷🏝🌈
They should’ve just adopted them
I never heard of this disease
My grandfather has this disease
@Sandy Allen Read my reply above!
iBaka-PG3D I’m so sorry to hear that! It’s a horrible disease.
@Sandy Allen
Read my reply above!
Songwriter Woody Guthrie had Huntington's and he and his wife were the founding people of Huntington's disease
I have Huntington’s
God Bless You
@@minsh5675 thanks so much. My brother passed away from juvenile HD
@@kristenrushing9077I have an in law with juvenile Huntingtons, if you don’t mind me asking ofc, how long did your brother live to? Just want to know how long I have with them.
Hope you're still doing okay.
:/. No bot robot
Imagine your family and communiy turning their backs on you, as you journey through. What I battle daily...
This is scary af
You have no ideal
More needs to be done to stop this illness people need to know before getting into a relationship with each other like Africans do with sickle cell poor Justin now he has to watch himself get weaker and weaker when he was so talented
12:00 _"…Kelsey turned to me and said, I want to be a mom as long as I can, so we need to have kids as soon as we can…"_
People tend to be very selfish. Kelsey wants desperately to experience the joy of having children even when she has been told that she has horrible condition that her children will very likely inherit.
💯 she is incredibly selfish
They did in vitro fertilization and were able to choose embryos that did not have the Huntington gene. That means both of their children are fine and will live their lives Huntington-free.
NO HER CHILDREN WILL NOT GET IT, THEY WERE TESTED BEFORE THEY WERE EVEN IMPLANTED IN HER.
My grandma and grandpa died to COV-19 :(
Sorry to hear that. I have lost family members from it too, but my wifes slow agonizing death from HD is more close to home for me and my child.
HD has ripped through my family like a wrecking ball. Survivors guilt is a real thing. It's a terrible, horrible disease.
I feel like people didn’t watch this video closely they didn’t take any risks having children other than her possibly dying early but it’ll be after the children are grown almost certainly they genetically tested their eggs before they implanted them her children are negative they found that out before they even got pregnant
Another reason to not have children.
dam their kids are probably ganna have it too
I have hereditary ataxia. Talk about that. Kind of th the same
It's all good, trump will be blamed
#drojeabacha
I bet if trump had this people would make fun of him for it
ITZ_ICY_GAMING if anyone had it people would be made fun of it
Well Trump himself mocked and made fun of a handicapped person
Why does everyone have to talk about trump so much just stfu
Hey, that man just kissed his son by the lips in to the video around 1 minutes !!! That is a troubled family in every other way
Are you high I wish my father was here so I could kiss him on the lips
Put this into your search engine: Doctor in Italy Astonishingly Quells Parkinson's Disease With Overlooked Vitamin Cure. (And the world pays no attention!)
Stop with the vitamin cure I wish that's all it took to cure my father
@@annmariechinn106
Sorry, if you do not believe in what this doctor came up with, BUT...
Please, if your Dad is still alive you owe it to him to read about what vitamin D3 can do!
You probably thought I'm recommending a multi vitamin regiment! No, I'm not!
Please, type this into your search engine:
Doctor in Italy astonishingly quells Parkinson disease with vitamin D!
Read any or all of them! THEN tell me to 'stop with the vitamin cure'!
Remember; it's YOUR Dad!
@@touchofgrey5372 dad is gone
@@annmariechinn106
Sorry to hear!