Huntington's Disease - Young Couples Impacted
HTML-код
- Опубликовано: 30 сен 2016
- Here you will see 4 young couples impacted by HD in some way, talking about how they first discussed HD and how they cope with HD in their lives.
Four families bravely share their experiences of living with Juvenile Huntington's disease. We advise viewers to be aware that this topic may be upsetting, if you need support email us at support@hdyo.org'
I'f you'd like to learn more about HD and JHD, please visit www.HDYO.org. If you'd like to help support young people, like these in the video, impacted by HD, please consider making a donation to HDYO here: en.hdyo.org/eve/about/587
‘I’ve decided I don’t want the test and live life as normal’ absolutely fine, you do you and live your best life, just don’t have children.
I am 72. When I married my childhood sweetheart I knew her father was suffering some type of illness.Huntington's was mentioned but a "dirty" word to anyone not involved with the family. My fatherinlaw was to die whilst my future wife was only 17. Her mother closseted the illness as she did not want to face the reality. Her husband had been violent, attacking the three children, neighbours etc and had to be restrained in a mental hospital. At his funeral his daughter, my future wife, asked me should she ever get this horrible illness would I promise to care for her at home. I gave her my promise. Sadly , after our first two children during our twenties, my wife was starting to twitch. Her mother and I both knew it was most likely Huntington's. I was to have a vasectomy at 30 but my wife, who lived for her children, begged me not two. We went on to have two more. This was a to haunt me later. There was no predictive test back then. I stood by my wife, who had become very violent at times, like her father. I went from go to whoa without any Carers or respite. It was a full 24 hour job,and my wife passed away at her (our) home in her 48th year. Our first child, a girl, was to show signs in her twenties. She managed independent living until she was 30, then with the help of Carers lived alone and childless(she never married) until she could not walk or talk coherently. At age 39 she came home to live a further 4 years with me. She was 43 when she died. My second child got tested and it was negative. She went on to marry and have 3 children. My last two, a boy and a girl, were tested positive. Neither married or had children. Both are in the latter stages and are in care. Should I liove another 5 years I will have buried three of my four children. I visit my children, now both in their 30's, twice a week. The gaps in this story are horrendous. I have been stabbed twice, gassed, had handbrakes pulled on the car at 60mph etc etc. So having lived through three generations of this illness, and still involved,I would never bring a child into this earth without first knowing via the predictive test my status. IVF is there for those wishing a child. Fortunately we have stopped our branch of this illness by those positive not having children.It is not a game and to bury your children is not anything I would wish on another. Not only my family, but all relatives and close friends etc that this illness affects. Thankfully there is hope on the horizon and one day soon we will have the cure.
Blackduck46 What an account of lives destroyed by this insidious disease. You have lived it. Truly lived it. From wife to children. Your account was frightening as it was so very descriptive. I could feel some of the anguish and sadness as well as anger you must have procured. I know no one with this disease but I look to learn the plights of others. The depth of humans spirits when up against gargantuan atrocities. This death sentence that takes the lives of all involved eventually. The carers suffer at every level. Family, friends and the victim of this suffers in ways unimaginable too . Thank you for expressing so honestly how it was and is living on the front lines. What a battle through life. Testing is paramount to end this. My heart goes out to you friend. Truly.
@Cat 123 interesting
@Cat 123 Pipe down. I think he is already suffering enough with the consequences of his decision as are his children without a random pointless keyboard warrior layering it on.
I am so sorry about your wife and children I couldn't imagine what you've been through there was no testing back than so how was you to know again so sorry
Cat 123 you are ignorant, I hope OP never see your comment
I think it’s the responsible thing to get tested. If you want children you should get tested
Oh ya? You have have the gene? If you dont then stfu cause you have no idea what its really like to be at risk. My grandpa had Hd. He had 7 children my mom has it and had 4. Who the hell are you to tell someone when and how they should have kids?? Hitler did the same thing. So just keep you ill informed opinion to yourself.
@Kathryn Mercier Exactly this. As long as people keep having childeren and keep passing it on, the desease will only become more common. If you really want childeren, how about adopting, getting a surrogate, so many options. I find it selfish of people who know they have this desease and stil go on to have childeren with the big possibility of passing it on to future generations.
@@Hawkman6788 I have the gene and I absolutely detest the human trash that breeds knowing they can pass this nightmare. Some people shouldn't be allowed to breed, we HD gene carriers are one of them unless we're talking about IVF child that has been checked for the gene before implantation.
But sure, keep telling yourself that there's nothing wrong with making children that a) have 50% chance of dying a horrible death young and b) will lose their parent young.
Amen
@@Andrea12438 I completely agree. I would never in a million years take the chance of passing this nightmare on to my own children and only continuing to spread it. Why would you want to take the chance of creating a life only to have them suffer for most of their life when the disease starts to take over. Get tested prior to having kids - period!
My husband was diagnosed in 2012. We never wanted children and said definitely not if he tested positive. When he got his diagnosis it was like a switch turned on inside me I was 34 and just wanted a baby. We went down the PGD IVF route and I had my little girl in 2016. She is the light of our lives and its amazing to think we've stopped HD from affecting our family further down the line!!!
I wish you all the best. My father has HD genes, no symptoms. I am 33 and never wanted to have children until now. Strange, isn't it? May be it's just the knowledge that I am at risk for HD, the fact that you cannot wait to long.
Praying for a healing for everyone
I've been tested for HD in 2007. My grandmother died from it and my mom didn't want to test so my brother and me were forced to do the test. On the day of the results me and my husband walked over the parkingplace, I had icecold hands. They just got warm again when I knew that I was free from the HD-gene. My brother didn\t have it either so the chance for my mother, having this awful gene is very small. But we had both do the ultimate sacrifice. I wish all HD-patients the sollution for cure and I wish them all the best!
Just found out my dad has HD, I'm 35 and going to get tested.
How are you now? What happened?
If people who test positive for HD would not have children, we might see this horrible disease decrease. However, if an at risk woman gets pregnant before being tested, that brings up another potential sad decision. Pray for a cure!
I feel very strongly that anyone who has a family history of genetic diseases should not reproduce. It is not fair to the children.
As far as I know HD can be completely eradicated if couples affected by the gene do not have biological children. I adopted an amazing girl at birth, and she is my life.
This is technically the case, but ultimately many families don't learn about HD in their families until after they have children. Every family situation is different. Adoption is obviously an option, but it's everyone individual choice what they would like to do. Also there are some cases where HD wasn't present in the previous generations so HD is brand new to families. There are some possibly science explanations for this, but to long to explain here. Please check out our website www.HDYO.org to learn more. Congratulations on your daughter!
Yes and now a days ivf is available where the embryo can be tested.
I think that's practically true, but technically not entirely true. Unfortunately the defect that causes the disease has a tendency to occur in the population. So if all current instances are quickly identified, and no more children inherit it from their parents then there will still be some randomly born with it by mutation. I'm not qualified to comment on this but its a rare disease, I'd imagine that if it was somehow confined to the few mutations you could comfortably consider it cured - it would become significantly more rare.
Mostly yes but there would always be some cases since mutations are a bith.
No, because there will always be spontaneous mutations.
I have it . my mother has it shes on the last stages. I pray for you guys !!! 💕I pray there is a CURE
i think they found a cure brother
Not yet
Three years later and still no cure. Prayers
It's genetic sadly, it's dominant, I. E. if one parent has it, their child has a 50% chance of developing it too, I came here because of Woody Guthrie
Just found out my dad has it. I'm 35 and going to get tested.
Please dear lord I pray and ask for your help to cure Huntington’s disease . I pray and ask for your help 🙏
wow thanks for this vid... my wife and I are going through the same thing. My mom has HD. You guys have inspired me to be strong for my wife and family. Bless you all!
AND YOU GONNA BE STRONG IN YOUR OWN WAY..... i wish you lots of love and strenghtness
Shaun Jones, please get tested. Don't pass this nasty Gene to your child. If your repeat rate is high, you can adopt. Please let's end the circle.
How selfish not to get tested and to have children..I wouldn't wish this dreadful disease on my worst enemy much less my own children...Of course she wouldn't have to care for them😡
I just have to say that this video is just what I needed to see. I have been in the exact same position with my now husband. The day i told him that i have the Gene was a very hard day but he was the most understanding and accepting person that i know. Now we are looking at the IVF path and working out what will work for us. Just want to say to the Organisers, thank you very much for putting this video together. It is just what people need to see.
On my personal account but thank you Melissa :) Glad it connected with you.
Thank you for going the IVF path. I don’t understand having children without considering that you could be passing it on when you know there’s a 50/50 chance of you having the gene, so I have the world of respect for people willing to sacrifice and go the IVF route.
My granddaughter has it. Her mother, and all of her maternal aunts and uncles have it. Her maternal grandfather had it. We, her paternal grandparents are caring for her. Hers is Juvenile HD and she started having symptoms at 14. Please find a cure!
I really wish there was a cure for this disease. It runs in my family, my mom is the only one that's living with it at the moment and it is absolutely horrible. I'm so scared that I might have it. God bless these people and their families. Praying for a cure
I know how you feel Shelby - I'm 32 and this has been in my family for generations my grandma died of it, my mom now has it for past 15 years and it is a horrible disease- and I tested myself when I was 20 ( don't know what I was thinking at the time lol ) at first it was scary and very depressing since I was very young and frankly at the time there was no support, no knowledge of the disease - I thought this is the best choice - but learned to live with the fact that someday I will develop symptoms and I'm glad that I know now since I can plan my life better and just live a little bit faster - don't be afraid to take risks, cherish every moment - and in the mean-time, I'm hopeful for the cure to be developed ( which we're doing really good by the way ) I'm only hoping that my kids won't have to go through what I've been through my whole life. Take care
Do you think that you'll get tested ?
Lovaly couples ..sad disease..life precious..cherish every moment
My fiancee has it and I am scared to watch him slowly slip away from me :( I want to get him counseling and I love him so much
Please tell me what it’s like on the other side. I have hd and my gf has tried to support me so much. She’s so good but I’m scared of slipping away and her having to go through that.
I have such a supportive girlfriend to help me though this. Huntington’s is something that you have to live with and that’s okay. I’m just scared of leaving her when I eventually go 🥺
Exactly, get tested before you have children.......
at least you know that having children puts them at risk
if it runs in your family you have a 50% chance of getting it. If you don't plan on getting pregnant or having children then I say live your life to the fullest. But if you plan to have children I think getting tested and if you do have it would you really want to put your children at Jeopardy? It's just something to think about
Do you think all the children in cancer wards have parents that wish they had not given birth?
Sondra Eacker I understand your point, but please consider how cruel the disease is and how important it is that people take steps to prevent it from continuing to spread. There are many children who need to be adopted, and for these couples that’s a very safe, kind, and viable option. Nobody is wishing that the children of HD carriers were not born, so don’t twist the situation because the case is completely different.
I just got tested....for the life of me I cannot understand not wanting to know. My life has been ruined and turned upside down. They think it might be Huntington's. I hope it is not but I will find out in a week or so.
Thanks for sharing, Ashley! Please reach out to us directly if you have anything you'd like to find support with. info@hdyo.org.
I really hope you don't have it. Both my sister and I had to test for the disease, and the result came back : we don't have it. You might have the same chance.
And I understand what you're saying. it was like a damocles sword over my head, all the time.
By the grace of God...i do not have it.
I'm so happy for you ! And you were very brave, to go through it.
I wish our respective sick relatives had the same chance.
Ashley Ervin I'm SO glad you don't have it God bless you . Live life to the fullest
My now ex Mother-in-law shared with me the HD history in her family after I had my second son. I didn't really look into it for quite a while (this was back in 1987). When I did I had emotions all over the place. My ex Mother-in-law has passed from HD 2 years ago. My ex-husband has 3 siblings, 2 have done the testing. One sister never had children and tested positive, another sister (my very close friend) tested positive. She has one son and 2 grandsons who haven't been tested. My ex-husband's 3rd wife refused to let him get the test because she was afraid it would be a problem with their insurance coverage. They have 2 children as well as the 2 sons I have with him. He talked with his oldest son and begged him not to have children, and they chose to have 2 sons after hearing. My youngest son is 31 and still single, and I wonder EVERY DAY how this disease could effect my sons and grandsons future. I appreciated this video, and being the mother of 2 potential HD carriers, I am going to share this with them. Oh, and the other brother of my ex has no medical insurance and can't even consider having the test and also has 3 children. So 2 of the 4 children tested positive, the other 2 remain untested.
This is how this dreadful disease continues to get passed down. Folks have to do what is best for the future generations and test. Not just roll the dice hoping the 50% chance doesn't bite
their desired babies in the butts. Test or do not breed.
I wonder where all these couples are now. Very interesting those who don’t want to get tested. It would be torture for me not knowing, I would need to know. Every little tingle would be torturous and you would think it’s an early symptom of HD.
It’s very irresponsible to have children and not get tested.
Agree
It’s very well to make that statement but IMO you can’t possibly know that unless you’re living with a family hx of HD.
@@karencorban607 People might not experience it personally, but they can see of how much suffering can be avoided just by not passing on this gene.
It’s a death sentence to future generations and people MUST get tested!!!
Who's going to have children without being tested?
So, the couples that tested did one of them have it? I’m confused because this video didn’t say if they had it or not.
It's implied that the blond woman tested positive.
James Salter , it was??
I'm in the early stages of testing
Please let us know if we can support you along the way, Andrew!
Andrew Sheppard What’s the result, if it’s not too personal to ask?
Hope you’re doing fine!
May god be with these couples.
A few of my cousins have it
My first girlfriend's mother passed away from HD, so she got the test and was told she didnt have it. It was incorrect, after we split up she went on to have two children and died in her early 30s from HD. Still upsets me to think about it.
So you can still do the ivf-pgd without knowing if you have inherited HD. You can say to the ivf place that you don't want to know but you want them to check your embryos for it and only put in one that doesn't have it. And not to tell you if any do have it. The problem with some people finding out if they have HD is that some people won't cope with finding out this information
more research is needed
Any updates on the couples?
All still together as far as we're aware :) two untested are still untested, Amy and Matt have tried IVF PGD to have children but it hasn't been successful yet. Fingers crossed for them in the coming years.
❤❤
Bf might have it. Feeling very alone m scared but this helped
Unfortunately there is no cure for this disease /My father died of this disease long ago and i dont know abt this (50%)
ali dawood it’s a autosomal genetic disease.This means one one parent has to be a carrier to pass it on.Giving the children a 50% chance of having HD.
Such a pity that HD and all of the other neurological diseases,like the Ataxias only show symptoms in adulthood, when unknowingly a lot of fit looking people allready have children. If it was a juvenile disease it would have been phased out by this time. Too much sorrow :'(
There is an HD juvenile disease
Well that's not completely true, spontaneous mutations are a thing unfortunately so someone can develop hd without having a I'll parent.
#Drisibor channel
I think this couple are very selfish and cruel to want to have kids when there's are good chance they could get the disease aswell
Bump
All thanks to dr Stanley who cured me from my Huntington’s disease I am forever grateful ..
Who ever Dr Stanley is it is impossible for him to have cured you of Huntingtons.There is no cure,
Fix your diet, problem solved. :)
Do u even know anything about HD. Genius
@@navneetdhal5986 I sure do. If you know how a disease works, you know the solution. For instance, you can't solve blindness with a diet.
If a substantial portion of common diseases are truly genetically inherited, whom did we inherit these diseases from?
And if these diseases were in fact genetically inherited, then the extraordinary increase in illness is the result of genetically diseased parents producing children far in excess of normal, "non-diseased" parents.
This is absolutely impossible because genetic deficiencies can not increase the ability to bear offspring.
So, any disease can be cured with the proper diet, because all disease are linked to it and your environment.
So you'll need distilled water, not tap water or bottled. Clean non-GMO food, etc.
This allows the body to heal itself. You get the idea?
@@saitamassj2475 This makes no sense. HD is an autosomal dominant disease, & diet won't stop you from developing it if you have the mutation
@@yusufkhan-ig7dv Sorry, there is no such thing.
@@saitamassj2475 do you have any proof?
All thanks to dr Stanley who cured me from my Huntington’s disease I am forever grateful
There is NO CURE. Don't post statements like this.
There is no cure.It,s not possible to be cured.