Fulfilling Life's Journeys with Huntington's Disease
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- čas přidán 8. 10. 2021
- Chris Hiron was 33 when Huntington’s Disease started to affect his physical movements. His fine motor skills started to deteriorate and he began to have less control of his limbs. A genetic condition, carriers of the gene have a 50% chance of passing it on to their children. It can affect people both physically and mentally and it will eventually shorten their lives. Micheal Hanly, who so far is asymptomatic, says that carrying the gene really focusses him on living his best life. Micheal's baby son has a 50/50 chance of having inherited the disease, but the search for medical solutions is advancing. Researcher Dr Malvindar Singh-Bains is exploring the possibility of genetically engaging with the Huntington’s gene to limit the effects of the disease. While a cure may be some time off, anything that can slow the disease's progress will be welcome news.
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For all the people commenting that these amazing and strong people shouldn’t have children…..where does that comment end ? No kids if you have any illness or disability ? That sounds a very scary path to head down, there were episodes in history where forced sterilisation was common but that is an evil and cruel piece of history. I can’t believe that some of you are judging and advocating this route 😕
It's nothing but eugenics and ableism.
Pathological altruism. The hell is full
@@au_barb eugenics is not bad at all. The problem is the kind of people who have practice it. At priori, the possibility of improvement of human kind, for all relevant instances, is nothing wrong.
@@objetivista686 Don't you ever say "eugenics isn't bad" to a disabled person ever again. GTFOH. 🖕🏻
@@au_barb histerical and tyrannical!!!! As expected from pseudo progressists.
Your capacity for rational analysis seems very underdeveloped.
I say whatever i want, buddy.
The world is way more complex than your rainbow version of it. I'm not the most healthier person in the world thought. Eugenics is not synonymous of nazism. Nazism was a completely stupid way to practice it. Nazis were or are dumb as hell.
I'm totally against abortion of down syndrome fetuses, for example. I have a complex opinion about eugenics and not simpler one as yours. But it's extremely selfish deciding to have kids even after knowing you have 50% of chance to transmit a gene that can make your biological son's life miserable like slowly dying from HD. It's nothing to do "I want to give a life's experience to someone". "We" know is not that. All biological parents share similar narcisistic desire but without problematic contexts (very heritable disease, poverty, parents with anti social personality disorders...) like this, it's understandable.
Meanwhile the world need acommodate all your insecure feelings, the same world is being gradually destroyed by idiotic "dreAmers" and their sociopathic masters whatever their ideological side, mostly whitey...
My Dad died of Huntington's, and almost all of the men on his side have died of it as well. I was adopted so they wouldn't pass the genes on.
Sending you hugs 🤗
With so many family members affected, it was a wise decision not to continue passing it on.
When you someone literally ends the family bloodline because it sucks
My father in law died from this my wife is dying now, we did pre genetic testing on our kid so we could end this here. Stay strong we got this.
@@Leboobs22 umm you don't have to end the family bloodline their are options, which me and my wife took advantage of.
I knew a woman who's husband died from it and he passed it to both his kids. He did not know about the disease or about being hereditary. The worst part is one of her boys had Junior HD and he died at the age of 12 and the other son died at 32. Her whole family is gone and she told me that had she known, she would have never had kids!!!
So very sad.
Heartbreaking. As I understand it, age of onset is tricky to predict and can be horribly young :-(
Shanitta knowledge is power. I'm hoping for the gene research to be able to turn the gene off. Knowing and testing is more than the previous generations had💙
Dr Malvindar Singh-Bains seems like a brilliant and dedicated researcher. I wish her all the best in her work finding effective treatment for this cruel condition.
For the people that suffer, I hope she’s able to find something soon!
I often worry about genetic conditions because I don’t know my familial genetics.
She is an absolute star as are all the other researchers at the centre for brain research I am Chris’s mum so proud of him too
@@maryhiron6587 he seems a very fine man, I wish you and your family all the best.
@ Mary Hiron Im wondering if CRISPR (not sure if this is right), the gene editing, is a possible solution?
@@lorriefinley3129 I believe that is one of the research areas. The difficulty seems to be that the HD gene is necessary so it can’t be turned off complicated mystery but very. Close to discovery ofway to treat the condition we have some of the worlds topbrain researchers in new zealand
The cure is Nobel prize worthy.
I have Huntingtons disease and seeing this beautiful video was so uplifting, Routing for a cure🥰
me too dear
What did you treat for HD, are you now ok? Can you share it to me because i need to know for my hubby having HD, thank you and god bless
Sending you love and peace
Sending you love and prayers that you have a great friend In your life to help you go through this
@@SheilaBasilio-bf4fl You should do some research. There is no cure. Once it progresses it's is like combining Alzheimer's, Parkinson's and severe mental illness.
Anyone with a debilitating disease tries their hardest to live a "normal" life. Those around them try to ensure that their life has meaning, especially because their lives are normally cut short. As a retired first responder, I wish people would stop judging those with disabilities. Never look down on anyone unless you are helping them up.
Kimberly amen to that!
While nursing at a physiatric hospital, I had the honour of treating and supporting a family with Huntington's Disease, namely a father, son and daughter. It broke my heart.
@ Nora from one Healthcare Professional to another 💙
It's tough for us HD families, but we appreciate medical professionals like you all.
My 17 year old cousin died of JHD. Thank you for taking care of people like her. My aunt and uncle wouldn't have been able to support her at home as long as then did without the help of the LVNs. Thank you!
This disease has seriously ruined my life, I try to be positive about everything but I just can't. I truly wish there are better treatments or maybe even a cure
My father died of Huntington's at 65, 35 years ago. He had 5 sons, 3 of which carry the gene. He was not diagnosed until he was 50. Back then, not too much was known about the disease and the only lab was in Boston Mass. It cost $600 for the test and the disease was semi-rare back then too. Since then it has become more prevalent. My brothers all had children before my fathers' diagnosis and no one wants to be tested at this point. I was his step-daughter and have no chance of being a carrier. Now, only the future will tell if any of my brother's children are carriers and if their children will have the gene. It was very difficult to watch this intelligent and loving man, slowly evolve into an infantile state and lose control of his body and mind. He was my daddy from the moment I was born and I love and miss him dearly.
Wow!
Vicki Lynn I'm so sorry. This is one of the worst diseases for sure. My heart goes out to you. I have a lot of Alzheimer's disease in my family. I would like to get tested, but my sister didn't. She drank herself to death and my brother ended his life. If I have I Have it. There's nothing I can do about it. I've given my daughter permission to put me in a nursing home. My Mom used to tell us to promise not to do that. As crazy and mean as she got, I had to. She almost killed my Dad & attacked me.
My mother in law died of huntingtons at the age of 87. She was believed to be the oldest person to live on record with it. She showed the symptoms starting in her late 30s. Thank God my husband did not have the gene.
Wow!! That's incredible! Someone in the comments on Hospice Nurse Julie's video about HD said she had an aunt who was diagnosed at 46 and died at 93.
My mom just got diagnosed with Huntingtons. I have just started to process to get tested. Luckily I dont have kids yet, in Sweden you are offered IVF if you are a carrier of Huntingtons. So they can test the embryos for Huntingtons and stop the gene to carry on.
My best friend's daughter-
in-law was diagnosed with HD when she was about 23 and had a husband and 2 year old son. As soon as the diagnosis was confirmed she just left in the middle of the night, and no one has heard from her since. That was about 11 years ago. I often think about her. I certainly don't blame her for her decision. Terrible, terrible disease; hope they find a cure very soon.
How terribly sad. I'm sure the family was heartbroken. I can't imagine how the diagnosed person felt!
Or at least treatments that may help control the disease. I have MS and there was no treatment when diagnosed in 1988. In 1993 a new drug was produced to slow down the progress of the MS. Here we are in 2021 and thought I can’t walk or stand I am still here😊👍
@@maryanngames9353 I understand what you’re going through. I had my first MS symptom in 1992 and now can’t walk or stand also. My husband is my full time caregiver and since I also can’t drive, he does all the shopping and cooking.
@@maryanngames9353 My aunt was diagnosed at same time as you. She was part of the Rebif trials. She has had only mild progression and now in mid 70's. 🙏👏😀
😥
I found out a few years ago that this disease runs in my family. I have 5 cousins that have been diagnosed with it. One passed away 2 years ago at the age of 55. We had no idea it ran in our family because we grew up in the 60’s. When I look back on my childhood I had an aunt that had horrible seizures and they said she had epilepsy, she ended up committing suicide in her 30’s. My uncle,her brother had horrible anger issues and when his temper got bad one time too many he ended up accidentally killing someone he died in prison of a brain infection. Their children were al diagnosed with Huntington disease just recently. It’s devastating.
Did you get tested to see if u have it?
@@katiestans2824 most likely u don't have it. I know it's starts from 2 to 80 they said. But I wish the best for u and your family
I look at this and am just so thankful that at 77 I am quite healthy. Bless these people and I admire them so well, how they handle their illness.
I feel like this is where technology can be amazing. For Michael's concerns about being able to be there to give advice to his son, do it now. I know it isn't quite the same but video diaries can be so special. He can see and hear his dad giving him all he life advice the wants to give him before he isn't able to. Seeing your parents speaking to you in video or even leaving a written diary is so priceless and something his son will cherish.
Amazing idea!
I am unfortunately very sick person too but I have a different illness - I am trying to remember to take photos from time to time with my son and make videos so when I am no longer able to do many things in life he will know what kin of person I was when my illness has not taken over My life yet
All the love to you :**
Recently found my bio father through ancestry. He has been diagnosed for 14 years. Currently he is 58 years old, in a full live in facility. I explained this to my primary doctor. She stated she will not test me until I have symptoms. She is scared the answer would throw me into a depression. My children’s pediatric doctor told me today, it’s law that I can’t have my children tested. It’s their right to have their own consent. That they might not want to know. I am 30 years old. I am a ball of emotions. This is scary just to think about. People say don’t think about it. How can I not think about it? 💔
If you want to know ask a different doctor. Nagging uncertainty is stressful as well
What country are you in? In the states, you can have your child tested for huntingtons
I'm curious which country you live in? If its the US you can get tested done at any time. I'm also at risk for Huntingtons my dad has it and he is the same age as yours. I think you should try and see a different doctor if possible. I hope all goes well. Huntingtons is definitely rough but if you or your child has it it doesn't mean they can't live a fulfilling life. You can get through this I believe in your strengths ❤️
Find a different doctor.
Your comment is a year ago, therefore if you are still symptomless then that illustrates you should stop worrying and just live your life. It is until you start showing symptoms should you then get tested and start to worry. What if you are going to be a late onset or it simply bypassing you hopefully. I guess these are all reasons if OK at present to why bother with testing. I hope you are still symptom free at this moment and reason to only worry when it tells you to worry as may never need to worry. I mean if you are to get it it’s beyond your control either way. So why worry about things you cannot control. 😊
Why am I crying watching this?
I am a practising doc of more than ten years who has been there with so many people in their most vulnerable life moments. The humility and realism in these stories has touched me. Makes you understand what a life well lived is.
Bravo to all these wonderful beings and the researchers ❤
This made me cry. I am 37 yrs old Canadian woman and I was my mom's caregiver all of my 20s until she passed in 2016 at 57. It is the disease from hell. The process for getting tested is the same here, it's very difficult. Not a simple blood test at all. I've honestly considered a mail-order test. I am at the dangerous age where you're questioning every time you forget something or bump into the counter. I don't have children at least. I always wanted a family but when I found out about HD
.. it's a very complicated thing to try and decide. I have 2 sibs at risk, both younger. 1 tested negative in 2020 thank goodness. My mom also had 2 sibs that tested positive and both passed in their 50s. My parents were the same, they knew nothing about how serious it was and decided to ignore it. Until they couldn't. The juvenile form of HD is even worse. Thank you for your courage and sharing your story with us 🙏❤🇨🇦
My husband was diagnosed with huntingtons disease in 2014 but displayed symptoms as early as 2010...his grandfather..mam and uncle passed with it and his sister and cousin also have it and my 2 children will have a 50 % chance of having it (one already has 2 little ones)..I've looked after him on my own with help from my daughter for all these years but now he's become violent and verbally abusive even lashing out at the grandkids..its like I'm living in a nightmare every single day...PRAY FOR A CURE
I'm sorry you have to deal with that. My dad also has Huntingtons I imagine I'm more around your daughters age. You can get through this I believe in your strengths.
Bless 🙏🙏 9:29
@@christinaday8438 Someone is violent and abusive and you tell her to hang tough? She needs to have him committed to full time care. He is violent because of his brain damage and she is at risk!
I am probably older than most online here. When I was young had a friend with Huntington's disease in his family. His grandmother, mother and aunt had it. He was from a big family. His family really liked me. They hoped we would marry. Having a family with him would have been a risk. I don't know what happened to him and all of his siblings. His mother died of it. Seeing her suffering was heartbreaking.
I nursed a lovely woman who had Huntington chorea on my 1st ward as a student nurse and have never forgotten her and her family. She was in her early40's.Its such a nasty illness.
Thank you for trying to bring awareness to this horrible disease. My family has it also. Great grandma had it, died at 102 but she didn't know anything for 20 years. After her, most of my family get living wills to stop a feeding tube. My Papa died at 80 but my aunt and uncle died much younger. Now a lot of cousins have it. Somehow i got lucky. I kinda feel bad about that though I'm very thankful. Please do everything you can to at least help it. People don't even understand this thing that's killing my family. To me that's the worst part.
And yes, now my family are getting tested before having more children. So we are now trying to stop it.
I’m in the uk and my mother and my uncle both had Huntington’s Disease, I was 19 when I found out as they both displayed the same symptoms and onset was very similar, I grew up thinking my mum hated me with the huge mood swings and violent out bursts and the beatings I got for the simple minor little things. I wasn’t ready to go down that path of what I saw as a death sentence and half my life cut out. It took me till I had my Son to get tested and THANKFULLY I’m NEGATIVE but my brother wasn’t as lucky. Both my mum and uncle past away now but my brother is starting the home stretch of heaven onset of symptoms and I’m so glad that in my family tree Huntington’s Disease will end with him. He couldn’t have children due to sperm problems, I think it’s life way of trying to eradicate the disease from human kind. I’m not a believer in religion as I’m my thinking how could a god create such a terrible disease. The families in this video are entitled to do the normal things in everyday life as the rest of us and it’s their decision what’s right for THEM. YOU CANT JUDGE UNTIL YOU’VE BEEN THROUGH IT OR KNOW SOMEONE WHO HAS IT. Life is for living and they only have a short amount of time to do that so why shouldn’t live to the fullest while they can. Sending you all love and support xxx
So…am I right in understanding that you only pass it on if you have it? The gene doesn’t skip a generation?
You’ve been through a lot - all the best to you.
@@carolynworthington8996 your right hun, you can get one good gene from the Dad and the affected gene from Mum which gives a 50/50% chance on passing it to a child they have together. If you don’t have the gene you can’t pass it on xx
I'm so sorry, it is devasting disease, but God did not create this disease. Contamination, toxins, and other bad stuff caused a genetic mutation upon conception, and that's how they all begin.
God doesn’t make terrible diseases humans do and mad scientist do government do just know that God isn’t capable of such things he’s pure love nothing else he’s good all the time because it’s impossible for him to be anyone else. If there is evil then it is by man messing around with chemicals and not trying to be like God but intern trying to be A God and we all suffer the consequences of the curiosity of man and his need to rule the world control, even if they had a clue could understand that no one controls anything without God allowing it.
If you dont believe in God, why blame Him?
As a person who cared for someone with HD until the end, my heart goes out to anyone with HD. It is such a complicated disease. My wish is for a good medication that can delay these symptoms that come with it and that people can live longer without having to stress so much. ❤
Rebecca Fuller, you are appreciated! You have a good heart.
Keep fighting everyone. Me and my wife have been together since she was 12 and me 15, I took care of her dad when this was killing him, now I'm taking care of her, but we did pre genetic testing to make sure it ends here, our kid will never get it. Jusy know someone is out there who knows what your going through.
Watching this video has uplifted my spirits. I come from a family of 7. My mom has HD and my oldest brother has also been diagnosed with HD. Some of my mom's relatives have died from HD even if they were never diagnosed. Other than our oldest brother, none of us has been tested yet. What's been eating me up is seeing my youngest sister start to display signs. I think she is aware of what is happening to her but it's rather hard to discuss. She and my dad have been our mom's primary care givers. So she is very aware of what's down the road. Her twin sister is already married and now has an 8 month baby. Am confused as to whether they are identical anymore because, twin B seems to be OK. Maybe it's just a matter of time before her symptoms also start showing. Anyway we choose to enjoy the time we have as best as we can. I love the attitude of all the people in this video. They are so kind and reasonable and understanding. They are informed. ❤
Thank you to all the participants for sharing your story ❤️
Yes indeed.
I have a story, but all you need to know is I understand and my heart is with all us going through this.
After watching this video. My humble suggestion is get tested for any kind of inheritance desease before having a child.
My daughter-in-law died of Huntington's disease. Now her brother is having symptoms. It's a horrible disease. A lot of people with this die of choking from lack of muscle tone when swallowing.
Or from aspiration pneumonia or from sudden cardiac arrest (the latter is how my 18 yo cousin with JHD passed away). So sorry for your loss! It is the worst disease, in my opinion.
As a nurse who has cared for several families with this disease I pray these researchers can find an answer so these families can live and grow in peace.
We want piece
Im at 50% risk for HD. Mom passed from it a few years back. Cheers from Canada! HD community is huge and very close worldwide!
Canada hasastronghdcommunity and is the home of muchwonderful research. Stay strong virtual hugs
Wishing you all the best.
Are you
Going to get tested?
I lost my mom as well. My brother and I will take tests the following weeks.
I lost my dad in his early 50s to this shit disease.
I have yet to be tested myself and honestly I don’t know how I’m going to muster up the strength to do it.
It truly controls my life in many ways however I do find great strength and a sense of purpose due to the possibility.
I’m 20 years old currently and I hope to see a cure in my life time.
I hope life is well for you.
I went to have my genes tested to see what my chances were of getting cancer as my mother, grandmother and grandfather all died from it.
I was not only told I have a high chance but also my mother and grandmother had HD. It blew me away as I already had two kids.
The whole testing process was horrific! The waiting for the results period was crippling.
I was planning who would look after my kids and even my funeral. Thankfully it was a negative result but since then I’ve been waiting for my kids to be old enough to tell them there’s a 50/50 chance they’ll have it. 15 years later and they’re nearly at that age.
That’s 15 years of mental and emotional torture that I wouldn’t wish on anyone. 💔
i’m so sorry to hear that Clare , i wish you and your children the best for the years to come
I thought that if a parent tested negative that the children they had wouldn't get it. Thanks in advance.
I opted to not have kids due to having the BRC1 gene and the high probability of passing onto my own children. We also have other health issues that I just couldn’t handle watching my child/children go through so I chose not to. If I wanted a child that bad, I’d adopt.
@@pegs1659 your correct, if you test negative for HD you can not pass it on, worked closely with HD it's a very cruel disease
Clare if you tested negative for HD your kids are safe it doesn’t skip generations you would have to be positive for HD to pass it on to your children❤️❤️❤️❤️
I had an Aunt (by marriage) who had Huntingtons. She inherited it from her father. She had one child. My aunt died from it and my cousin died from it. It's an awful thing to see.
Continuation from my last message. I have gone through everything with my wife, from physical and emotional violence, she can no longer drive cook be alone with my daughter. It's a lot but there is still a beutiful person in there, she just has lost control of a lot of her motor skills so we all fight this as a family as a community. She also has a sister in the end stages. I'm here for anyone who has questions from coping, social security, long term care, charities to fight this or just to pick my brain, or just to speak to someone who is going through what you are.
unless you're family is affected by this you will never know what its like to deal with it.
Fabulous families. Strong, loving and determined. My own brilliant daughter is pursuing a medical research career (despite it being far less financially rewarding than a career in medicine) and is determined to make a difference.
FYI: Some families have no history of HD until it suddenly appears. An example would be parent has CAG of 37 and doesn’t develop symptoms. Child has mutation where repeats increase to 40 so will eventually develop symptoms. So just saying not having kids will eliminate the disease is not totally accurate.
Good point I haven't thought of that.
What is a CAG?
CAG is referring to CAG repeats. It is the number of times that this DNA code is repeated. So, if there are 37 then it would be CAGCAGCAGCAG....(until the CAG is repeated 37 times).
The more CAG repeats generally the worse it is because this long string of repetitive DNA letters is disrupting the gene
So heartwarming to see these families, just being there for each other, sticking through thick n thin. Everyday heroes. Hope they find cure soon for HD 👍🏻🌻
A friend of mine had it. At 21 she had no idea and we thought she was on drugs or drunk. She died 10 years later. It was horrendous. Her life just deteriorated and she died a dreadful death. Like dementia one of the worst diseases.
My mom, 2 of my aunt's, 2 of my uncles, and my grandma died from it. I've seen this disease destroy many of my family members. My cousins and I are still fairly young (late 20's- early 30's). None of us have been tested.
If there is one thing I've learned about Huntington's, the lifestyle you live will either speed up the process (smoking, drinking, bad eating habits) or slow it down (healthy lifestyle). Regardless of how you live though, if you have the gene, it'll eventually take you out. I would love to connect with others going through this as I've never met anyone outside of my family with Huntington's, God bless to all!
Look on line for a Huntington's support group. That would be a great resource for you.
At one point the gentleman stated they really didn't understand it. This why we need to get the education out there. My grandson just learned he has it passed from his birth father. The birth fathers entire family is affected. All the young men (20's) in the family are systematic. Extremely sad. Educational resources and genetic counseling can play the most important role in ending this fatal cycle.
I knew a family who was affected by this gene. I'm so glad they are close to a breakthrough. God bless the lives of those who have it and those who chose to love and support them despite it. Their lives have purpose beyond words. 🙏💙✝️
It will be remarkable when there’s a cure for this terrible disease.
Dr singh-baines, thank you for your dedicated research. I know my family is being helped by your research everyday, and your tireless labour is truly appreciated. I wish my family could have met you
Finn is such a sweet and beautiful baby boy. I pray for a cure or at least a successfully effective treatment. ❤
I would just like to say that all of you who have been diagnosed are all amazing people. And Nikki, your an amazing soul and will surely be blessed. Good luck to everyone in this documentary.
Thank you for reminding us to appreciate the small things. Find joy in every day, and love those that surround and support us.
My heart breaks for these people. What a nasty disease. We need a cure.
Nikki and Pia are amazing. As a fellow caregiver it takes a lot of strength. God bless them and their journeys.
This is a great documentary, but as a mother of a child with Juvenile Huntington's Disease, I wish you would have touched more on that. Also I'm wondering if that father understands that his son could possibly develop symptoms as a child, not just the possibility as an adult.
I was curious about that... So, if a child gets it at a young age they inherited from one of their parents? I'm just thinking of this when a person has early set on Alzheimer's or dementia I'm talkin that someone who gets in their thirties forties that shows that it is more hereditary opposed if someone gets Alzheimer's in their 70s or 80s. It's kind of hard to articulate I hope you understand where I'm coming from. Thank you...
@@winros It's hereditary in almost all cases, Juvenile Huntington's or Huntington's. In the few cases where there's no family history, it's suspected that it's just a missed diagnosis - either the parent isn't showing signs yet or passed away from something else (car accident, cancer, whatever) before becoming symptomatic.
@@chellesama8256 It's hereditary in ALL CASES not almost all cases. You inherit 50% of your genes from your mother and 50% of your genes from your father. That is why there is a 50/50 chance that a child on a parent with the disease will get it.
Such great advice and so much love!
Thanks for sharing all this information and emotion. I know how you feel. I am cag 40 in 2018. Late onset in the family. No symptoms yet. I have told my friends. None of them had heard of Huntingtons and it was upsetting to try and explain it all. Yes the progress for the blood test was stressful, but i would rather know than not know. I hope there will be a cure soon.
Thanks for sharing,everyone.
Your bravery and wonderful spirit is admirable
Hugs
Warm wish
Beautiful wedding vows and people! And film! 💙💙💙💙
We should all be kinder to each other. Some folk have it really hard in life and they face it with courage.
I pray that you are successful in all the research you are doing.
Prayers and love to you.
My girlfriend has huntingtons she got diagnosed when she was 29 and now she is 54 but now she's not eating and losing a lot of weight and having these like tremors in the night so sad 😔
Micheal I hope you think about possibly doing some videos for your son Fin. So you can put those worries away about being there for him. You can do an overall video, then bunches of topical, theme videos.
sadly i lost a friend 2 years ago at the age of 22 from this disease
I pray for you my neighbor just passed away from it although she lived into her late 60’s they lost a daughter to it at a young age after dental work in her late twenties.
I really like this dr. She’s so smart and adorable at the same time
So much love, respect and strength 💝🙏💝
A prayer: Dear God, give wisdom to researchers to find a solution for this condition, may angels assist them, and may peace fill them in the Name of Jesus, amen!
I have HD and suffering from Central neuropathic pain in my entire left side. Today my neurologist told me after years of searching what to do, i don't have any options left. In november i will get euthanasia because I can't live with this pain any longer. 50 years old and do have still a pretty good memory and learning skills. My muscles kill me. We've got 7 people with HD in my family and all the males are suffering with the same pain conditionw. All 7 are between 21 and 73 years old. The males are much more fiscally struggling.
Bless you ❤️
One of my step brothers died at the age of 51 from complications of Huntington's. He started showing signs and symptoms in his early 30's. His mom died at the age of 42. It absolutely ravaged his family on his mom's side of the family. It's a horrible and heart breaking disease.
My biggest fear as a foster kid is not knowing my family medical history and my health issues are literally a nightmare to diagnose because they don’t have the history. So I have no idea what I have coming to me genetically…. Its SCARY!
You can go to a doctor and have them do genetic testing for you. That way you can have peace of mind or know what to do if something comes up.
@ I am a Melon Go to a Geneticist and have testing done.
@@lorriefinley3129 That’s what I did. My brother and I are orphans. I found out and ruled out many things from genetic testing
So sorry! Get tested.
My grandma died of this... it was awful to see the last years. I decided to get the test by myself, alone without any kind of advice. I do not have the gene, i do not know if my mom does, some of her brothers and sister may have it. I wanted to know to plan my life and be able to think of euthanasia. I wish my grandma had that option, they kept her alive in suffering.
I want euthanasia too. There's no better way to go than peacefully and painlessly, surrounded by your loved ones.
@@ER-nh9ss totally agree
Before you got tested did you have any anxiety, depression or mood swings or things happen that made you think you could have it? I'm so glad you tested negative, that is amazing! HD runs in my family too, I pray they find a cure soon!
my grandma was the first one in our family to get the diagnosis, it is really bad on her side of the family. after learning about it and the symptoms it was easy for the family to pin point which ones of her older generation that also had it. and since then so many of the younger generation have had the diagnosis too.
@@elizabetholson6725 hi sorry for the delayed response. I was living in Spain by that time, so basically I decided to go to a lab and I told them I wanted the test because my grandma. I did it and I was very very anxious when I was about to see the results. But I am relieved. I saw all the care and stress my mom had. It was nightmare. I would not like to be a person that could be a “problem” to my family. I would rather prefer euthanasia in case there’s no future for me. Is the Huntington running in your family?
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.
HD is not talked about enough but, Juvenile Huntington's Disease is especially not talked about enough!
I think everyone needs to understand that unless you know a family member with this disease or have been affected yourself, you cannot possibly understand this disease from a twenty minute documentary. This disease is hell on Earth. Yes, the person is actively dying by the protein destroying their brain but they’re oblivious to the changes most of the time. It is the family that has to cope with the emotional abuse and trauma this disease brings. I don’t think it’s right to abort children with chromosomal disabilities that can live a fulfilling life. But I think it’s absolutely cruel to have a child knowing they could have this disease and having that child watch their parent deteriorate and then live in this constant state of anxiety knowing they could be the same towards their future family. It’s bad enough watching my partner battle his fears over getting tested for this, let alone making a poor choice to pass on that pressure to my kids. There is so many options for having children without this disease that either need to be spoken about more or funded by the government to stop this horrible disease from affecting millions of people.
@ 215Ela yes, Chris said he did not notice the changes occurring. I cant begin to know the emotional or physical strugglres of family members living with a loved one with a cognitive disconnect although I cared for many in my career in Long Term Care.
Totally agree!
my sister and another brother are ill too, they both have children and grandchildren, and though many times I´m glad I dont have children of my own so I dont feel like I have to be tested (I´m very coward), I´m glad my parents decided to have us, and I love all my nieces and nephews, and their babies. I wouldnt want a word without any of my relatives (as annoying as they can be, Huntington´s makes them beligerant and stubborn), even knowing that some (or no one, if we get lucky) of them will go through this. There´s hope. My brother´s dead taught me I had to stop doing things I hated, because life is short. My nephew was sweet and lovely even when he couldnt move or swallow, he never complained; my brother is doing the best with the time he has, and I love him for that. My sister has mellowed and we are taking it one day at a time. This film is beautiful, thanks to whoever made it.
Did your siblings know that they had HD?
I have Huntington's disease and my own family have turned their back on me becasue of the stigma....but i do have good friends who are their fornme and i do try very hard to stay positive for them but i have unfortunately tried to take my own lifevand have self harmed....but i realose that in the end i have to battle this alone and even thou its lovely to see familys who care for eachother for some of us this is not tne case...but i have avsaying that family does not always mena blood..but who are the ones standing with you at the end who end up being like family...but even thou my own thoughtsv can take me to dark places..i find music always helps...im 56 and music has always been a constant...plusbi always think that even thou my own sisters and my own kids and grandkids dont have Huntington's they can at least have a normal life so i count my blessings that way.... i walk in my mothers and my uncle and grandfathers shoes...literally i know that for everyone life is hard and we must always be their for each other... i know my time is limited so with that in mind i relish every moment....because life is to short to do otherwise.... im not sure if there wikk ever be a cure...but i shall always never give up hope the for others there will be...💚
But there is PGD this time that is you can go IVF and checking if the fetus inherited it and then using only the healthy ones.
Very sad. If a child inherits from a father the chances increase for juvenile Huntington’s, before the age of 20. One resource I have read said the youngest child that showed symptoms was 18 months old.
To be human is to suffer, but always hope.
Not worth it!
Life is meant to be lived and not to have a life of misery!
Stop with the false notion that “hope” will fix anything.
really impressed by the strength of love.
I watched a euthanasia documentary based around Huntingtons disease and it was hard to say from any angle for those that wanted it "no, suffer the muscle cramps and memory loss and inability to eat properly or go to the bathroom by yourself- you could still love for 5 more years."
Did you see the recent article of a woman who wanted euthanasia because she has HD, only for the decision to be reversed because she wasn’t going to die within 6 months? The worst part is that she may not be able to give consent when she’s at her worst!
@@sarcasticallyrearranged I think she is entitled to decide her destiny. She is the one who is suffering after all. If it were me, I wouldn't want to live, either.
Thank you for sharing with the world. I just read Inside ‘The O’Briens’ by Lisa Genova and wanted to hear some real people’s stories. I’m hopeful they will find a cure soon! I know it can’t come fast enough for families affected by HD. ❤️
My grandmother had HD and mother had D and i have undiagnosed HD my cousin dies at 42 sure he had HD im m sure many more of my family have HD. you get tired of hate being laughed at and moked and verbaly abused it get tiring. Thank you for posting it's hard to stop shaking and crying. took me 30 mins to wrire this
Little Finn is absolutely adorable!🥰
Woody Guthrie (very famous folk musician who wrote "This Land is Your Land" and many other songs) died from this disease. It was called Huntington's Chorea back then.
I am new to sharing my struggles but I guess this is part of my therapy. I am a 42 year old man, my wife is 40 my daughter is 5. I met my wife when she was 12 and I was 15 we have been together ever since she is the most beutiful persom you would ever meet would give you the shirt off her back. I watched my father in law die from this, I fed him, bathed him, helped him with therapy etc. Fast forward my wife became psychologically sypmptomatic at around 32 we didn't expect this, then physically at 35 or so. At the same time she had just given birth to our daughter which at the time we didn't realize actually accelerates the disease. One good thing is we did pregenetic testing to make sure our baby would never get HD.
I am so sorry to hear about your wife. Thank goodness your daughter is not a carrier. Make as many memories with your wife and daughter together as possible and take lots of photos/videos of all of you together for your little girl.
I am another family that has Huntingtons. My grandfather my father an a brother. I'm 73 an have a sister 69 . Thankfully we are ok so far. In our family sytoms seem to come on around 50. I have had 3 children with only 2 living. A son who's retiring from the miltary. It seems to run in the males in our case. I can say after looking after my brother it is one of the horrific things anyone can face. So scared for my son.
One can’t imagine what it is like to live with familial Huntington’s.I sincerely hope that with continued research & time they find a cure
May god be with Micheal and god bless his family.
I work with Huntington patients. My heart goes out to anyone that has this disease.
I love all of you guys
I hope there son is negative when he is older and gets tested for Huntington’s
I sadly lost a very good friend of mine. She was 58. Now I wish her daughter and grandchildren won't get sick with HD. 🌺
@Margit Schonfelder - has your friend's daughter & grandchildren been tested?
My hypothesis is that beyond a threshold of repetitions of the triplet CAG where C may be transformed in T, the action of Cytosine methyltransferase adds CH3 to cytosines in a rythm that overwhelms the capacity of the repair enzymes Cytosine glycosilase to remove the wrong Thymine that produced an inadvertent Stop codon within the longer CAG triplet repeats. If that's the case, then maybe an existing drug like Decitabine could slow down the methylation of cytosines. There are side effects.
My mother and older sister have died from Huntington’s. I feel like my other sister is showing signs. In my family members who have had it have become very mean and seam crazy. Has anyone else experienced this? It’s heartbreaking. It’s a terrible disease. I have myself and two other siblings still alive and without symptoms so far. It’s so awful 😢
Huntington runs in my husband's family and it's so terrible. Wish they could find cure!
Just saw a 9 year old die of it. His 10 year old brother also has the disease. They were misdiagnosed until recently
Unfortunately I know JHD well, but never heard of a 9 yr old dying from JHD.
That is just brutal. Tragic
I'm at that moment where I just found out this disease runs in my family blood and I'm searching everything that could help me to understand more about it. I hope I don't have it though, felt pretty upset knowing that no treatment is available yet :/
Working in home health, one of the most impactful experiences ive ever had was working with a woman with Huntingtons. Id never met anyone with it before and i was sort of scared of her initially bc of not knowing what to expect. The fact that most dont find out they have it until after child bearing, and that theres a 50% chance of passing it to your kids broke my heart. It sort of takes the choice away as to whether you want to take the chance of passing it to a baby. I will never ever forget Dixie, and the kind of impact she had on me.❤
There is testing now for the fetus. But since the conservative Supreme court outlawed the federal right to abortion, fetal testing is pointless in at least half of the states because you could not abort.
My grandfather had it.
6 out of 9 of his children had it.
My aunt who had it 2 out of 3 children had it.
My mom had it.
Most of my uncle's don't have children bc of it.
All my family is gone. Idk why I'm still here.
Why play Russian Roulette having children when you have HD?
r u for eugenics?
I hope little Finn gets lucky.
I have lost my mother-in-law, husband, and youngest son to HD. My older son (who is still alive) also has HD. I know this disease all too well. I wish there would be some research into a no carb diet like that often used in seizure patients. I'm curious how ketones affects HD.
I wonder as well.I am caring for my daughter with HD.She is in the middle stage.She is vegan so keto would not work but I made significant dietary changes when she came to live with me.He chorea and memory have gotten worse but her mood is bright no depression and she is more motivated in self care despite taking the anti-chorea meds.I would love to try keto
@@4winds773 My son is also in the middle stages. In May he had a heart attack. Since then, he has stopped drinking full sugar sodas. He still does zero sugar sodas but not in the volume he used to. He now fasts 16 or more hours a day and is mostly carnivore, though he's not 100%. He has lost 35 pounds and his sleep schedule is much better than it was before. His HD seems to have stabilized at its current level and I have not seen a worsening of his HD symptoms, which given this disease, is something (for now).