Huntington’s Disease – Young Couples Impacted

Huntington’s Disease – Young Couples Impacted


My name’s Lauren my name is Mel and we’ve
been together five years my name’s Amy and I’m Matthew we’ve been together for
five years now yeah five long years I’m I’m Kristin I’m 23
I’m Thomas Gordon I’m 25 years old and we’ve been together for first six years
my name is Andrew and we’ve been together three years. And my name’s Rachel, shall we do that again? We talked to four young couples to find out how HD affects their lives together My mum’s in the early stages my dad has HD and
also my sister has HD as well my mom was diagnosed about 10 years ago now my mum
has HD she started displaying symptoms when I was in early high school the
first time I spoke about HD with Matt was about two months after we’d started
seeing each other I wanted to tell him about it before he met my parents I was
very nervous to try and get to help someone understand it it’s very
difficult to do I didn’t really know anything so it was hard to sort of talk
about it and put my like opinion on it I think it was a really difficult
conversation for Andrew to have, I could see that he was struggling while telling me
about it but I really appreciated how honest he was about it and that he could
trust me with it I didn’t know anything about the illness at all and then after
I did some research I quickly realized like how sort of bad it is and how
little people know about it so you know I was quite shocked it was pretty
heartbreaking news right when I first met her mum it was not strange but
she warned me she won’t really talked to you. Actually, she did
speak to me quite a bit did she she’s more of a just one-liners and when she
did say something to make me cry from it I think she was more nervous
than I was Two of our couples decided to get tested for the HD gene when I was about 16 I’ve done a lot of
reading about HD and I kind of had in my mind that I would want to be tested and
just for peace of mind for me for me really to plan my life I met Matt in the
process told him about my plans which he fully supported I think it was bothering
you wasn’t it they’re not knowing and that she couldn’t deal with not knowing
it was a big shock but I’ve got lots of support especially from Matt my friends
and like my dad it was a big it was a huge thing yeah but it didn’t bother you
no I think we dealt with it really well we always spoke about it which really
helped so any problems or worries I had we always spoke about my decision to get
tested was something that we both talked about a lot before I even started
counseling or anything like that he would come back from appointments and
he’d got told something new and trying to process it was like we did
that together but again that was quite tough and and the final appointment was
particularly tough when we did get the result and two couples decided that they wouldn’t get tested yet I’ve decided I don’t want the test and I
don’t want to know so therefore we live in our lives as if but it’s not there
we’re just trying to get on with our lives and like normal like a normal
couple rather than having this big cloud over us
Kristen knows that I want to get tested I do eventually when we look to have
kids I do want to get tested the thing that worries me about is obviously I can
get tested for it and say if I do come back positive then obviously there’s
stuff in place that we can do like IVF and stuff like that but the thing that
worries me about that is it’s invasive and it’s going to be invasive for you as
well as it is for me and that’s invasive both of ourselves got to make sure that it’s not just about me it’s got to be something that you’re willing to do I
think we’ve both sat in web kind of Center is something that we would look
at we are currentlyand in the process of
having IVF and with the PGD we knew that was something that we definitely wanted
to do just to eliminate any possibility of our future child having
HD if there’s something I can do to prevent it from going any further in my
family then I would do everything I can to stop it We asked if they had any advice to other couples facing the same issues you can still live a
completely normal life with HD and we’re getting married we’re going to have
babies so it you can live just a normal life just communication and honestly I
think that is the biggest piece of advice I would give anyone because the
fact that we’ve always talked about it and we’ve always been so honest it’s
helped our relationship because we’ve always just talked about everything
don’t let it hold you back if I am affected by and I do test positive it’s
never going to stop me from doing the things that I want to do And finally, we asked how they felt HD has affected their relationship overall I think HD has had a positive impact on
our relationship and it just goes to show how committed Matt is to me. it’s
made us much closer yeah definitely like I feel I know you more and also got for the
family and that as well we’ve had to talk more and communication is a big part and
honesty is a big part of a relationship because it’s has to be from the start so
just think it made our relationship stronger dealing with all of that it was
one of the hardest times wasn’t it yeah we got through it so it’s only made us
stronger I would totally agree with that yeah it’s made us stronger in a way and
some kind of odd way, but is has Thank you to all the couples who took part in the video.


23 thoughts on “Huntington’s Disease – Young Couples Impacted

  1. 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!

  2. 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.

  3. 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 didnt 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!

  4. Unfortunately there is no cure for this disease /My father died of this disease long ago and i dont know abt this (50%)

  5. 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.

  6. 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.

  7. I've read that UCLA has an experimental protein blocker that has been showing incredible results and may and hopefully will be the cure

  8. 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

  9. 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.

  10. 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.

  11. 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.

  12. Hey wtf, why is everyone saying: "Don't have children if you have HD"? Makes me sick, really. Wtf, let people have love and children despite their having an illness. There are far worse people who shouldn't have children than people with HD for frecks sake. SO many illnesses your children can get from you. HD isn't the worst of them. Most people can get old with it. It's hard to have a disease like that. But manageable. Don't EVER say to people that they shouldn't have children just because they're ill and could pass it on. It's not your business.

  13. 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!!!

  14. The first cure according to Huntington`s disease was in 1973. It took 22 months. The
    proceeding is documented in the book “Orthomolecular Medicine For Everyone”,
    written by Abram Hoffer, MD, PhD, and Andrew W. Saul, PhD. Abram Hoffer was
    asked, if a treatment with a meagavitamin therapy could help to slow the rate of
    deterioration. He and his patient understood that there had to be no
    expectations of recovery on anyone´s part. Relating to the start of the
    treatment the Patient remained well at its end.

    This case was not the only one of successful medical attention of this Illness.
    Information without bias are to find for everyone in the web-sides “Journal of
    Orthomolecular Medicine”. Other sources of information seem to be in an
    addiction, this could mean they need their orders for advertisement to survive.
    There are powerful lobby´s and high amounts of profits behind, which are in
    need of protection.

    If pharmaceutic drugs are leading a well body into an unhealthy one, why must they
    – compulsorily – lead a sick body into a sound body? In all those cases, where
    people pay their usual medicinal proceeding with side effects – which can be
    horrible – , is the price that is to pay really justified?

  15. Please dear lord I pray and ask for your help to cure Huntington’s disease . I pray and ask for your help 🙏

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