Huntington's Disease - Mandy's Testing Video

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  • Опубликовано: 21 дек 2011
  • A documentary following Mandy as she goes through her testing process for Huntington's disease. (Used in HDYO's Genetic Testing section). Please consider making a donation to HDYO here: en.hdyo.org/eve/about/587

Комментарии • 324

  • @Blackduck46
    @Blackduck46 5 лет назад +216

    It is hard for me to go on these channels. I am living through three generations of Huntington's Disease. I buried my Father in law, his daughter (my wife) my eldest daughter, and are at present caring for two more of my children with this illness. I am 72, should I live another 5 years I will have buried 3 of my 4 children. Only one daughter was negative. All children took the test and have produced no offspring to carry this gene further. Our line will die when my last two, in advanced stages, die. It has affected the "chosen one" so much that she has difficulty in watching her siblings deteriorate. There are no winners. My sole pupose in life is to see this through to the end. Not a journey for the faint hearted. I was stabbed twice, had one burn my home to the ground etc etc. Most know what it entails. The answer is fogiveness. And unconditional love. He burnt the home down, I had it rebuilt and brought him home. They suffer so much. It truly is the Devil's own disease. Thankfully there is a light on the horizon and in the near future they will have the cure, if not, the pathway to manage this illness. Bless you all.

    • @lizajohnson260
      @lizajohnson260 4 года назад +26

      May the Lord wrap His loving arms around you and give you the peace that passes all understanding.

    • @me-xx2gl
      @me-xx2gl 4 года назад +10

      My fiance, now deceased, had a similar story, except he passed from another condition, diabetes complications at age 50. His first wife had it. One son had it while my guy was still alive. 1 son was killed in an accident, and now, 22 years after the fiance died, I found out his 2 other children have it. One daughter has 2 children. I had spoken with her years ago and she said she would definitely get tested before she decided to have kid. Obviously she did not. Such a tragedy to pass the chance on when there is testing. I have noticed through postings though that those who are reluctant or do not test are the most likely to have it. Makes one wonder just how early the judgement impairment sets in. Their brain knows, but their emotions deny. I watched the devistation and would not wish that on anyone or any family.

    • @misafvful
      @misafvful 4 года назад +8

      Blackduck46 wow I dated a girl both her father and her have Huntington’s disease. I really liked her. I spoke to her about getting Married and having kids, She told me about her condition and that she didn’t want to pass it on to a future generation. I really never understood until now 2 years later.

    • @generalpurpose772
      @generalpurpose772 4 года назад +3

      misafvful That’s so devastating, she loved you so much that she couldn’t let you watch her suffer and die a slow and painful death and risk passing on her condition to a new generation if you had kids.
      Still, if you can’t stop thinking about her and you know she’s the girl for you - go and get her, and hold onto that love even if you know she has less time on this earth than most people have. If you have found love again then I’m so happy for you, and I’m sure she would understand and be happy for you because when you truly love someone you put them first above all else. Good luck on your journey, follow your heart.

    • @misafvful
      @misafvful 4 года назад +5

      Still Ill I wish I would have understood earlier. I think what we had was beautiful I’m just glad I understand now . I could seek for her again but i won’t be sure if she will remember me. I saw her go through some episodes that at the time I didn’t understand.

  • @twfoth
    @twfoth 8 лет назад +158

    Without the slightest embellishment, everyone who lives with the spectre of this disease is a hero.

    • @daniellemahoney8876
      @daniellemahoney8876 7 лет назад +19

      Toby Fothergill I just found out that I have HD and this comment that you have made actually means a lot. Thankyou

    • @twfoth
      @twfoth 7 лет назад +11

      I'm so sorry to hear that Danielle. I'm assuming you may have had family experience of the disease, no doubt that complicates your experience further. I'm glad that my heartfelt admiration is something that gives you comfort. HD, as a single-gene disease has good prospects of a disease modifying therapy in the near future. Saying that, I don't at all mean to minimise the trauma of what you're going through right now. Stay hopeful. - T

    • @annalubenow1233
      @annalubenow1233 5 лет назад

      You put it pretty pricisley

    • @nazrulislam-ol8wt
      @nazrulislam-ol8wt 4 года назад

      Not a doubt . I wouldn't have said it better .you said word straight from my heart

    • @oldschoolmusic5390
      @oldschoolmusic5390 4 года назад

      If they only knew#shadowangelz#shadowtribe....shadow

  • @AS-yz2iz
    @AS-yz2iz 6 месяцев назад +5

    Someone needed to hug that woman after she found out she her test results!

  • @davehodgson6668
    @davehodgson6668 3 года назад +116

    I've watched your video ten times and cry every time the negative results are given to you. Three of my four kids weren't so lucky. My oldest, a son , gene positive, committed suicide in 2019. My oldest daughter refuses to get tested, but obviously has HD.And my youngest daughter tested positive, and has survived two suicide attempts. We need a cure and soon.

    • @lindalee9177
      @lindalee9177 2 года назад +10

      So sorry for your pain. God be near and give you comfort!

    • @wakeuppeople7327
      @wakeuppeople7327 2 года назад +6

      I’m dating a woman who has this terrible illness. And she says this. I cry. Tell HER. Baby. Don’t do this. I love you and will miss you. Don’t talk like this. We need you. I tell her. Who will I make love to for 2hrs straight. I finally found you )). She smiles. Says you like that. I said honey. Best thing ever and holding you at night. Even with twitching.

    • @ninakoch1799
      @ninakoch1799 2 года назад +3

      Did you know about HD running in your family/partner‘s family when you had kids?

    • @stepht7508
      @stepht7508 Год назад

      There is a way to eradicate this disease.Get tested before having children.If gene positive either do not have children or have
      IVF...they can test the cells and only implant
      negative gene embryo.

    • @davehodgson6668
      @davehodgson6668 Год назад +5

      @@ninakoch1799 No we didn't

  • @frangipang1955
    @frangipang1955 4 года назад +32

    At 35, I was in denial about HD. Till one day I decided I could no longer live with the uncertainty. All my siblings felt the same. One by one we were tested at Guy's Hospital, London. Out of seven of us, my brother was the only one who tested positive. We knew. He'd been showing signs for a while. He lived a good life. He has two IVF children, two grandchildren and a full life till he was fifty and now at fifty nine, at stage four, lives in a wonderful care place, where he is loved and cared for. He's happy. His world is different to ours, but he's ok. ❤❤

    • @DingusX2
      @DingusX2 3 года назад +2

      kala kalim he has kids without using his seed- his kids cannot get it. They biologically aren’t even his.

    • @cloroxbleach5159
      @cloroxbleach5159 3 года назад +1

      @@taylorscott7402 STOP

    • @huntsman145
      @huntsman145 2 года назад +1

      At stage 4 patients are bedridden, can barely move and CAN'T COMMUNICATE with the strangers that tend to their needs. But if you say so, then of course.... it's all sunshine and lollipops.
      😒

  • @marcdorse9848
    @marcdorse9848 3 года назад +24

    Mandy may your life be full of joy...and love and a dozen children!!!....Your video brings back memories for me...As a 5 yo I was placed in care due to my mother being ill .When I was a boy of 12 , I was told my mother had died of HD a year earlier.....I didn,t know what HD was....this is such a cruel disease....families are fragmented...so much pain and fear....When I was in my early 30,s I was contacted by some lovely caring folk from HD Australia who asked me what I knew about HD....and that of my mother,s 4 children my sister and 2 brothers were stricken with HD....I had not seen them/no memory of them as we were separated and placed in care...names changed etc.....This came as a shock....I was informed that a test was available.....the HD support folk were so very caring.....After counselling I opted for the test.....the walk down the corridor to receive the results was the longest walk in my life.....I remember the lovely HD support person Iris and the very kind and humble Psychiatrist Dr Marshall bringing their chairs closer to mine....and when they said the results indicate you are not at risk of inheriting HD...I burst into tears...hugged Iris and picked up Dr Marshall in a bear hug....he is a slim man...and I am 120kg and 186cm tall and I was shaking and crying inconsolably and laughing.....Mandy I fully understand your emotions.....Emotions bottled up for years....avoiding relationships....debating in your mind whether to have children....how to plan your life....not wanting to be a burden.....I feel so very grateful...but also feel survivors guilt.....To all the folks out there touched by HD I wish you all the very best....and pray that treatment for HD shall allow all to have a quality of life....filled with love, best wishes Marcus in Australia

    • @turnerdubler8991
      @turnerdubler8991 Год назад +1

      thank you for sharing your story. I'm sorry for your losses and grateful for your personal outcome.

  • @MikeNewlyn
    @MikeNewlyn 7 лет назад +110

    I was tested at 28, I tested negative...Most of my family are gone because of HD, I am relieved for you, and thanks for sharing :)

    • @ankitasharma8990
      @ankitasharma8990 5 лет назад +2

      Reply me plz

    • @mumr4268
      @mumr4268 3 года назад +2

      Sorry for your family lost☹💗🌻

    • @MikeNewlyn
      @MikeNewlyn 3 года назад

      @@mumr4268 thank you :) regards Michael :)

    • @benjilds6860
      @benjilds6860 3 года назад +3

      This video and your comment had learnt me that my problems are nothing. L'ets take thé best of the life we have one ! (I'm sorry for your family)

    • @MikeNewlyn
      @MikeNewlyn 3 года назад

      @@benjilds6860 thank you 😊

  • @swstryker
    @swstryker 12 лет назад +35

    I actually got so involved I raised my fists in the air and started pumping them up and down and yelling "YES! YES!" when Mandy found out the prognosis. Awesome!
    I have a 31yr old son and a 23yr old daughter who are both in the 50/50 group. Their mother is in late 2nd stage/early 3rd stage HD. Their grandmother, Aunt and great-grandmother all died of HD. It is a horrible, despicable, cruel disease. LET'S GET A CURE NOW!!!

  • @TexasbyStorm
    @TexasbyStorm 6 месяцев назад +4

    Imagine knowing its a coin toss and you land on the right side. I hope she went on to have all the kids she ever wanted and has a beautiful, wonderful life.

  • @davidangus8127
    @davidangus8127 3 года назад +17

    I worked in a day hospital for people with Huntington's or early onset dementia, after leaving school. It was the best thing I did. These people were so brave! And all walks of life - a university lecturer with Alzheimer's, a former model with Huntington's - these diseases do not discriminate. But they all lived such full life's in spite of their diagnoses. I'm so glad I had the privilege of working with these people. I was a selfish brat in high school who felt the world owed me something. I'm glad to say the experience changed me, I just wish we could change the outcome for those affected by HD.

    • @charisserempel23
      @charisserempel23 8 месяцев назад +2

      How thoughtful and kind you seem. I wish you the very best. The world should be filled with people like you.

    • @Cozycountry1
      @Cozycountry1 27 дней назад

      Please, don't say brave. My mother had HD and it was horrific watching it destroy her mind and body as I cared for her. I have yet to be tested for it and didn't have children and I didn't want to go through ivf. People with it would rather not have it than be labelled "brave" which I think is patronising. This disease is one of the cruellest to exist and if I test positive I wouldn't stick around to be bedbound in diapers and choke on food. There is no bravery or dignity in it only theft of your body and mind.

  • @traceyhanson7569
    @traceyhanson7569 9 лет назад +122

    Thank you for giving me the strength to conquer my fears.
    Watching your video was so true to how I've felt for so many years. From my early teens this horrible disease has been thrust into our lives. My father so influential to me, started to change with mental and physical personalities and was eventually diagnosed, along with his sister, in 1991 at the age of 45. Me , mom and 2 other siblings saw dad change from been a super racing hero to a dad who beyond his control diminished rapidly in 12 years not being able to feed or dress himself. This horrible disease took my dad's spirit and eventually his life.
    Unfortunately being a 50/50 disease it's now taken over again in my 2 sisters. It just feels like it won't go away.
    But watching this video, after more than 30 years of not knowing , has finally given me the strength to conquer a result. And after the longest month of my life, I was given a result that my genes repeated 17 and 20 times and I would not develop Huntington's. After 30 years of pure fear has turned into elation and I THANK YOU from the bottom of my heart giving me the courage.
    I just want to let anyone going through this to know there is a chance of good news when everything seems so stacked up against you

    • @alateerlifestyle1368
      @alateerlifestyle1368 5 лет назад +3

      it's hard tho ... i am afraid and i can not test . i don't think that i can handle it

    • @ankitasharma8990
      @ankitasharma8990 5 лет назад +2

      @@alateerlifestyle1368 reply if you read this comment

    • @alateerlifestyle1368
      @alateerlifestyle1368 5 лет назад +1

      ​@Dissenting Tirade i get you'r point and i am living my life by doing the best i can to remark my life with great achievements . but i think i might get in to deprecation if i know for sure that i will get sick with hd in my 40 or 50 :(

    • @alateerlifestyle1368
      @alateerlifestyle1368 5 лет назад

      @@ankitasharma8990 i replayed thankyou

    • @elizabetholson6725
      @elizabetholson6725 Месяц назад

      HD runs in my family, did you ever feel like you had symptoms of HD like the mood swings, trouble concentrating, forgetfulness, etc? I am so scared to get tested, I am going to be 37 and I pray asking God every that my mom didn't have HD, she never was tested for it and she passed away from liver failure in 2005.

  • @honpaul2203
    @honpaul2203 7 лет назад +27

    wow, that's extremely touching...the moment she finds out is just undescribable

  • @mercedes2375
    @mercedes2375 Год назад +5

    Watching this 11 years into the future and knowing there is still no cure breaks my heart

  • @amberherrera3048
    @amberherrera3048 5 лет назад +36

    My test was positive too but my repeats are low. I have just really started seeing extreme changes in my memory and reading comprehension. Plus my anger becomes explosive. ❤️

    • @ankitasharma8990
      @ankitasharma8990 5 лет назад +5

      Amber how are you now?
      Plz reply

    • @madison3514
      @madison3514 5 лет назад +6

      I hope you’re well, Amber.

    • @huntsman145
      @huntsman145 2 года назад +6

      @@ankitasharma8990 You don't care. You're just curious. It's in poor taste.

    • @Yolo_Swaggins
      @Yolo_Swaggins Год назад

      @@huntsman145 Actually this person is most likely some type of scammer who will try to take advantage of people who make the mistake of giving them any of their time.

  • @aricmackenthun1206
    @aricmackenthun1206 8 лет назад +34

    I am so happy for you that you will never have to go through the pain of having that devastating disease. And I hope that you live a long, full and happy life. All my best wishes for you and your family.

  • @bdmbpm1467
    @bdmbpm1467 3 года назад +12

    OMG I burst out crying with her. The most raw and real video I have ever seen on RUclips.

  • @nai506nai6
    @nai506nai6 6 лет назад +27

    My wife might have it, fingers cross for my beautiful wife doesn't. I love my wife very very much and I 'll take care until my wife dies in my arms. My wife cried when I said that. Seven years together and many many more. A cure will be around the corner.

    • @bridget5180
      @bridget5180 5 лет назад +2

      Nai506 Nai prayers for you & your wife

    • @20britneyspears
      @20britneyspears 4 года назад +5

      Update? I. Hope she is OK x

  • @burrefpv9273
    @burrefpv9273 2 года назад +5

    I destroyed a big piece of my life because I didn't test me. But when I finally was tested i didn't have it. But I am happy for every day now. I hope you have a wonderful life. Love from Sweden.

    • @elizabetholson6725
      @elizabetholson6725 Месяц назад

      HD runs in my family, I don't know if my mother ever had HD she passed away from liver failure in 2005. I'm 37 amd so scared to get tested, I pray asking God every day that my mother didn't have the gene. I'm so happy you don't have it, that's amazing. Did you feel like you could have symptoms of HD before you were tested? Like trouble focusing, anxiety, mood swings, etc.? I feel like a lot of symptoms can be similar to HD and it not be. It's so sad and I hope one day they find a cure. My aunt has it and she is still doing good and still can do most things on her own. My grandfather was 74 when he passed away from HD, he had it pretty bad.

  • @33stevelinda
    @33stevelinda 4 года назад +5

    iv been living with HD in my family since 1987 when my nan passed with it i also lost my mum my brother and my uncle to it and as i write this comment my nephew is in the middle stages of it . its a horrendous condition to live with for the HD sufferer and its not much better for the family who dont have it as effects everyone close to them . i have been tested and i dont have it myself but i ensured i was test before i started my family because if i had been diagnosed with HD and there was a 50/50 chance of me passing it on id have never started a family! god bless anyone who is suffering HD in one way or another weather your a family member or a carer to the patient you are all angels with a heart gold

  • @pabdiary
    @pabdiary 7 лет назад +29

    Very powerful video- HD runs in my family. I have epilepsy and sometimes I start feeling sorry for myself, but I do not have HD and when I see what my Aunt has to endure, I count my blessings. In the end we all have to love the things we do have, the people, the family, and each day we get to live

    • @HDYOFeed
      @HDYOFeed  7 лет назад +2

      Well said +KO Bossy ! Thank you for watching and sharing!

    • @jayg.8446
      @jayg.8446 3 года назад

      I have epilepsy too. Certainly not as horrific as HD. At least with HD though the vast majority of those carrying the gene will not exhibit symptoms until middle age, which I am now.
      My epilepsy started at 16 and it has destroyed my confidence and my attitude towards life knowing that I am at risk for seizures.
      It is wonderful that this young lady tested negative for HD. As s person with epilepsy (at least my form of it) I understand why some people at risk for the HD elect not to have children.

    • @dottietruthseeker4546
      @dottietruthseeker4546 Год назад

      Epilepsy here, too. But 3 of my 4 cousins are HD positive and we lost One in her 20’s. Love. That’s the only answer that matters.

  • @nativenuggets76
    @nativenuggets76 5 лет назад +20

    I was tested not long after my mom was diagnosed. My results were negative.. my brother was not so lucky. What a horrible disease. I live with a lot of survivors guilt. Why them and not me? Watching her suffer for years was painful. Cherish every second of your life. Especially if your happy and healthy. Don’t take life and love for granted.

    • @taylorscott7402
      @taylorscott7402 3 года назад

      Earlier this year I was diagnosed with HUNTINGTON DISEASE and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. including HUNTINGTON DISEASE , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for HUNTINGTON DISEASE and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now HUNTINGTON DISEASE free, all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: drjoshua.ighalo@gmail.com or contact Dr. through his whats-app: +2348028753934 They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

    • @nativenuggets76
      @nativenuggets76 3 года назад +3

      Taylor Scott I’m sorry but I do not believe your story.. Huntington’s is not some kind of virus like the flu! It’s a neurological disease that is caused by lack of threads in your DNA strand. This “herbalist” dr you speak of CANNOT add DNA material back into your body! Impossible!! Please do not spam crap like this to try and gain profit from such a horrible disease. It’s highly unethical to the people who suffer or have lost loved ones. It’s not a joke, this is a devastating disease that destroys people from the inside out. Stop spamming cures that don’t exist. Really you should be ashamed of yourself for trying to profit from such a horrible disease. I really hope your a bot and not a real person, cuz this is disgusting!

    • @nativenuggets76
      @nativenuggets76 3 года назад +2

      Thora Friganza yes it’s very disturbing that some people have no conscience about taking advantage of seriously ill people. It makes me angry. Greedy, evil people.

  • @zhicheng708
    @zhicheng708 6 лет назад +28

    I got my blood drawn 2 days ago. Waiting 3-4 weeks to know the results. Wish everyone best of luck. Take care. -San Francisco, California

  • @randymcgee2603
    @randymcgee2603 Год назад +3

    If a person in a family has it all family members before they have children should be tested! Stop peoples suffering from that strange horrible disease, it's so unfair and heartbreaking

  • @mommapanda1020
    @mommapanda1020 11 лет назад +11

    Watching this just brings me to tears. Everything you said is how I feel right now and have for the last few years. I still have not been tested but think about it every day. Thanks for sharing your story.

  • @lorimayo3241
    @lorimayo3241 5 лет назад +7

    I am so happy for you. This is a terrible disease. My daughter just past away in January after a 15 year battle with Juvenile Huntington's Disease. I pray every day for a cure for this disease and families will no longer suffer from the turmoil and heartbreak that it brings into their lives.

  • @cannedcrickets9932
    @cannedcrickets9932 3 года назад +3

    The relief she felt must be unbelieveable!

  • @fantasma5764
    @fantasma5764 Год назад +4

    I got tested because I have dealt with the mental torment for years and always knew it. I am gene positive and will fight every battle of the day.

    • @bioshawna
      @bioshawna 6 месяцев назад

      You are brave 🙏🏻 chronic illness is never easy... Been sick all my life now my geneticist offered the option to test. Very nervous! At least if i tested positive it would get rid of the toxic people in my life who assume i just dont want to work 😢 I already have lyme disease which is tough enough. God bless you on your journey brave soul and soak up every bit of happiness you can in life ❤️ live for you and yours.

  • @jennifertierney9895
    @jennifertierney9895 8 лет назад +14

    Very emotional video, I am ecstatic for you! I too tested negative but my sister was not. She is living with HD and so is my dad. I have a sister with 4 children that has not been tested. Prayers for a miracle to stop this brutal disease. Prayers for all who are touched by HD. Again, so happy for you. It was torture to make the decision to be tested and unbearable waiting. It took 12 days for my results to come back. I also would like to share that If you have siblings and someone is positive it is really hard to be happy that you are negative. I have survivors guilt and found it almost impossible to tell her I was negative. I am so happy for my children as they have been very affected watching my dad and now sister fight this ugly disease. God bless you all.....

  • @andyfarren2217
    @andyfarren2217 6 лет назад +13

    Hi Mandy,
    Thanks for your video, my dad may have Huntingtons, will find out soon, if he has I am going to get tested, I have a son with Duchenne Muscular Dystrophy which is another terrible genetic disease and I am praying that he does not also have this too. You are so so brave, and I really hope you have a wonderful life!
    Andy

  • @dk2919
    @dk2919 5 месяцев назад +2

    Sitting here crying 😭 The 3 weeks I had to wait for the test results were cruel. Thankfully I won’t get it either!!! 💙

  • @marisarae766
    @marisarae766 5 лет назад +7

    Thank you for being so brave, for looking the most excruciating thing every human has to face head on. My husband has not been tested and it eats at him every day as he ages. His dad, 2 uncles, and grandfather all died by 43. He’s 36. People (including his mother) seem to not think IVF is necessary, but seeing this and your agony (like his) ensures me that I will do whatever it takes to have a healthy baby. God bless and your dad for sure is watching over you, telling you he loves you over and over...

    • @taylorscott7402
      @taylorscott7402 3 года назад

      Earlier this year I was diagnosed with HUNTINGTON DISEASE and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. including HUNTINGTON DISEASE , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for HUNTINGTON DISEASE and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now HUNTINGTON DISEASE free, all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: drjoshua.ighalo@gmail.com or contact Dr. through his whats-app: +2348028753934 They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

  • @sandratapia915
    @sandratapia915 7 лет назад +9

    Mandy dad was looking after her to make sure she didn't developed huntington disease. Im glad that her results turn out negative

  • @geztinsdale
    @geztinsdale 3 месяца назад +1

    thank you for sharing this, brings back those feelings I had when I received my results 21 years ago which still feels like yesterday. My emotions that day identical to yours and I just wish everyone else going forward gets the same negative result x

  • @nongkasem4794
    @nongkasem4794 2 года назад

    I’ve almost cried after watching your video from Thailand . So happy for u and I’ certainly sure that whoever has had got through the period of this kind of this situation would feel the same. Wishing u a delightful future.

  • @Melissabsja
    @Melissabsja 11 лет назад +1

    So happy for you!!!

  • @breathlessinbedvlogs
    @breathlessinbedvlogs 2 года назад +4

    SOBBING, so relieved for you ❤️

  • @LouiseRoseVladimir
    @LouiseRoseVladimir 9 лет назад +15

    My mom has HD too at a very rising final steps now, it's hard to know that she never told anyone and never wanted to get me and my brother tested, we raised up living in horror, and my mom hasn't never been a mom, I wish I had her, wish I could forgive, say it all was the disease. But it hurts to know how you were treated, well now my brother got the test, and his was positive, so that means that he tries to live his life now as he wants to, and I hope he is happy, I'm turning 19 in 14 days and I hope that after my 2 year old education I will be more okay to take the test too, and hope to get a life with my fiance without thinking of eding up like that. My sister in law told my fiance that if he wasn't ready for what could happen to me if I was tested positive, then he should walk out the door, and that is long time ago now. I hope to give my future kids a future and a life knowing they're parents love them, give them a life that I did not get. To all you out there, good luck, cause this is the only thing I think is worse than cancer. I hope you all understand my story, aand write me if you want to know more. I would never give my kids a life with HD, and even if I have it, then they need to know that no matter what happens, then I'll always love them, and Jonas as well!
    Louise

    • @agga357
      @agga357 5 лет назад +1

      How are you, Louise?

    • @gingerlin8965
      @gingerlin8965 3 года назад

      Good luck! ❤️

    • @lindalee9177
      @lindalee9177 2 года назад +1

      My dad had HD and yes his behavior was hard to live with. Finding out he had HD helped me forgive him because it was due to H D brain dysfunction. I know you will be a wonderful mom whatever happens because you understand. God bless you!

  • @angelamartin2811
    @angelamartin2811 5 лет назад +3

    The loud music in this video overpowered it and took away from it. But I cried happy tears on the results!

  • @lucyirace1123
    @lucyirace1123 4 года назад +4

    I'm unbelieveably happy for you

  • @corrine4247
    @corrine4247 6 лет назад

    Thank you for sharing your story with us. God bless you

  • @thelwood
    @thelwood 12 лет назад +1

    Excellent! Thank you and congrats!

  • @desertbreeze69
    @desertbreeze69 6 лет назад +5

    I have a friend whose family has been ravaged by this horrific disease! So happy that you won't have to experience it yourself. It's sad enough that you've had to see your family suffer. 🌺

  • @dianamiller6745
    @dianamiller6745 3 года назад +3

    This is the 2nd time I've watched this video the first time I cried like a baby which I'm sure will happen again but I just wanted to say that this video was so well produced that you feel what she feels, the emotion is so raw it captures the feelings one would have with the agonizing wait for the results of the blood test. I couldn't imagine the psychological trauma she went through.

  • @Scampergirl
    @Scampergirl 11 лет назад +2

    I'm so happy for you! Live with Joy!

  • @beckyjo8745
    @beckyjo8745 5 лет назад +5

    I am so very happy for you!!! I had goose pimples when she said you wouldn’t get that horrid disease!!

  • @russolson212
    @russolson212 9 лет назад +36

    I agree with swstryker. I'm still crying happy tears for you. I just wanted to see one of these videos where the person being tested doesn't have this stupid disease. I just wanted to see someone sort of beat it. I am so happy for you, even though I don't know you. I wanted to jump up and down.

  • @williamparker1085
    @williamparker1085 Год назад

    her rationale for running is so on point.......one can shut the world out for a while.....hope you are still with us

  • @sallymccoy6286
    @sallymccoy6286 7 месяцев назад

    I cried with you when you received your negative diagnosis for HD. THANK GOD.

  • @JodiLewisWithAi
    @JodiLewisWithAi 7 лет назад +11

    WOW! I decided a year ago to get tested, Im going to ucsf next week. Very emotional and relatable! Also very inspiring! Thank you!

    • @bridget5180
      @bridget5180 5 лет назад +1

      Jodi Lewis hope your test went well Jodi

    • @anusreetravel
      @anusreetravel 5 месяцев назад

      Got your result?

  • @yaelryzowysilverstein5207
    @yaelryzowysilverstein5207 10 лет назад +2

    Definitely cried at the end and I don't cry easily. Thanks for sharing your personal, moving and difficult story. Wishing you all the best in the next chapter of your HD free life =).

    • @flessid
      @flessid 6 лет назад

      Yael Ryzowy Silverstein i

  • @judithwerner5301
    @judithwerner5301 Год назад +1

    I'm overwhelmingly happy for you. May God help those not so fortunate.

  • @victoriariley7490
    @victoriariley7490 Год назад

    Tears of complete Joy🌼

  • @aricmackenthun1206
    @aricmackenthun1206 8 лет назад +1

    hey mandy. I am so sorry for you and the loss of your father. I really hope that you test negative. I hope that you can get through this very tough time. I believe that you will with the love and support of your family. All my best wishes for you and your family.

  • @sarahmorrisette1046
    @sarahmorrisette1046 5 лет назад

    Pure joy. I cried like a baby.

  • @ItsMOMOBitches
    @ItsMOMOBitches 3 года назад +1

    Oh, man. I just started bawling when it was negative. Thank you, universe.

  • @madison3514
    @madison3514 5 лет назад +3

    All those years of worrying all came out whenever she heard the negative result 💜

  • @gingerlin8965
    @gingerlin8965 3 года назад

    ❤️so happy for you.

  • @huerabby6198
    @huerabby6198 7 лет назад +10

    was balling to this video wow your so lucky! i hope i myself turn out negative later in life

  • @bkay1535
    @bkay1535 2 года назад +2

    Lovely Mandy, I am so happy for you, I started bawling. Would love to see an update on your life.

  • @staceelynee
    @staceelynee 10 лет назад +86

    I wish i was that lucky :(
    my test was positive..

    • @heidipost2958
      @heidipost2958 10 лет назад +16

      Yu are still a strong person sweetheart.

    • @huerabby6198
      @huerabby6198 7 лет назад +22

      Stacey Walker you still have alot of life ahead of you :) enjoy it to the fullest ♡

    • @heleenabatts9413
      @heleenabatts9413 7 лет назад +8

      Stacey Walker I am struggling with the test delema....

    • @huerabby6198
      @huerabby6198 7 лет назад +4

      Heleena Batts best wishes! Stay strong 💚

    • @truegemrn
      @truegemrn 6 лет назад +2

      ❤️

  • @kristinespangler1237
    @kristinespangler1237 9 лет назад +11

    Oh thank you for posting this. I'm going threw the same thing right now! Everything that was said about every twist and twerk it just could be the beginning! I'm the only child my mom is 54 and in the last stage of HD. I'm 29, and want children when I was 14 I said when i turn 18 I'm going to go get tested, but never did. It hits really early in my family my two cousins are 26 and are really showing signs. I show nothing, but you never know. Thank you again for sharing this video. RIP Merrill family

    • @andreapalafox5309
      @andreapalafox5309 8 лет назад

      thank you for posting this. I feel the same way. I'm currently 25 and I'm not showing any signs but its hard not knowing if I will get it

  • @dianaadams7943
    @dianaadams7943 10 лет назад +5

    I just watched your video. I am so happy for you. My ex husband died this past January from Huntingtons disease. I worry about our son every single day

    • @rigersvatoci4975
      @rigersvatoci4975 Год назад

      Let me ask you a question so that I can relieve your worries.Do you have any predecessors that had this disease.If not,your boy is 100% safe.If you had a family member which suffered this disease,then your boy is 50% safe.I hope you didnt have anyone in your family who suffered this disease

  • @willettej7988
    @willettej7988 3 года назад

    Why do we need to share in this pain? I KNOW how much pain is in the world. I need to be in the light. God bless you ❤️🙏🏻 This is what gratitude looks like, friends!

  • @karencahill4798
    @karencahill4798 Год назад +1

    I am praising God for your Great News.🙏🏼

  • @nazrulislam-ol8wt
    @nazrulislam-ol8wt 4 года назад +2

    I am not that emotional person but I got little teary after the negative announce of the result .I can partially feel her relief of being normal .

  • @QuinnVioletViola
    @QuinnVioletViola 4 года назад

    Thank god im so happy for you ❤️❤️❤️🌸🙏🏽

  • @vickyoconnor7396
    @vickyoconnor7396 8 месяцев назад

    Life is precious.

  • @audramuth4147
    @audramuth4147 Год назад

    Wow what a relief that must have been

  • @20britneyspears
    @20britneyspears 4 года назад +1

    I'm so happy for you, my mother was lucky that she the oldest of 11 didn't have this gene, my uncle just died with HD 2 days ago and it just makes you think about how we are so lucky in our family but I hurt so much for people who have to go through this horrible disease, you are brave 💜

    • @taylorscott7402
      @taylorscott7402 3 года назад

      Earlier this year I was diagnosed with HUNTINGTON DISEASE and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. including HUNTINGTON DISEASE , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for HUNTINGTON DISEASE and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now HUNTINGTON DISEASE free, all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: drjoshua.ighalo@gmail.com or contact Dr. through his whats-app: +2348028753934 They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

  • @sheilastirling6045
    @sheilastirling6045 9 лет назад +5

    Thank you so much God for Mandy's health!

    • @highten443
      @highten443 9 лет назад +1

      Praise the Lord!
      I pray for a cure for those who are affected.

  • @kittycat6195
    @kittycat6195 Год назад

    OMG. That’s amazing news.❤

  • @rolandriddle7674
    @rolandriddle7674 5 лет назад +9

    Neither mother or husband jumped up and cuddled her .......how strange........she must have felt elated but alone

    • @markm.5756
      @markm.5756 5 лет назад +5

      I was thinking the same thing Roland. Not even an expression of joy from Mom or Husband. No hug - no happiness. I don't get it.

    • @bdmbpm1467
      @bdmbpm1467 3 года назад +1

      I thought it odd also. Her best friend cried joy tears with her. But thinking about it more both her mother and husband needed to process it for themselves also. Either way, positive or negative test results, there was alot to process and internalize for the years and days leading up to the day she got her results. I know for myself once I let the emotion and tears flow it goes to the crazy place that I would not want on a public video.

  • @audramuth4147
    @audramuth4147 5 лет назад +2

    Wow what a heart wrenching story . That kind of pressure is terrifying . To have a 50% chance of getting one of the most terrible diseases in the world .

  • @GoebbelsWife
    @GoebbelsWife 2 года назад

    Her dad must be looking down at her, so so happy to see this

  • @Sandra-pm3it
    @Sandra-pm3it Год назад

    Thank you God, for sparing this young woman.

  • @zulemaandviolet2824
    @zulemaandviolet2824 3 года назад +5

    I’d take the risk of finding out. I think if I had it I’d make sure to live to the fullest and cherish every moment and if I didn’t have it it would 100% put my mind to rest and would still make me appreciate moments in life. Also, if I had I had it I would want to know before deciding whether or not to have children

  • @desireebuettner890
    @desireebuettner890 7 лет назад +9

    My mom and grandma died of Huntington's. My mom died at 26 I was only 10 at the time. I didn't get to live with my mom very long only when I was really young. My mom didn't even get to see her mom because my grandma died when my mom was two weeks old. I have 3 younger siblings that can have a chance at getting it too. I'm getting tested on October 7th, in Mason City. I really hope it's negative but I really don't think it will be. I have a few symptoms already. I have lose of balance, starting to have speech problems, and weakness in my arms and hands. I'm not going to have kids if it is positive because I don't want my kids to end up without a mom. I also don't want them to have a chance at getting the disease.

    • @kimberlyfetterman866
      @kimberlyfetterman866 7 лет назад +2

      Desiree Buettner hey Desiree how did the testing go you're in my prayers and you're in my thoughts

    • @jasminedavys6170
      @jasminedavys6170 7 лет назад +1

      Desiree Buettner how did your testing go? I'm getting tested sometime soon

  • @bettydamnboop3030
    @bettydamnboop3030 Год назад +1

    Thank you God 🙏🏼

  • @dhbx9828
    @dhbx9828 5 лет назад

    Omg balled my eyes out

  • @charisserempel23
    @charisserempel23 8 месяцев назад

    My sincere condolences to you and your family. Have a high school friend whose husband had Huntington’s disease. I don’t even know if they understood any of it. The genetic thing or whatever. They had five children together. The children are now having their own children. I do not see it ending well. It breaks my heart for all of them.

  • @Lily-yf4mi
    @Lily-yf4mi 8 лет назад +11

    that fear that the disease may start anytime and questioning if that event is the beginning of it all,that is the worst thing, and then the wondering of whether you want to be tested and know...
    Even if I were to test negative it would not make me any less worried because my sister or older brother my carry the gene inside them. I would in a way feel selfish in being happy with a negative test result.

    • @nazrulislam-ol8wt
      @nazrulislam-ol8wt 4 года назад +1

      You right. But feeling good when something good happen to you is not bad, you just have to hide your happiness so that the less fortunate people around you doesn't feel bad . So as long as you not making them uncomfortable then it's fine. And I can tell from your words that you are very nice person .feeling guilty about your wellness just because your loved one is in pain. So I know for sure you won't let them feel bad by your action because you will be over careful about that

  • @JonathanHernandez-mm3nd
    @JonathanHernandez-mm3nd Год назад

    May god be with Mandy.

  • @farhatjabeen6776
    @farhatjabeen6776 5 лет назад +3

    May God heal all of Yuh

  • @saintmartinez6512
    @saintmartinez6512 3 года назад +2

    it breaks my heart to see this woman desire to be a mother.

    • @mollyhorse
      @mollyhorse 2 года назад

      Seriously...why would anyone who has the possibility of passing this disease on breed?

  • @marywolters3612
    @marywolters3612 2 года назад +5

    I do believe that even though I did not contract it, I would not have biological kids.It is such a horrible disease
    .

  • @margepaz
    @margepaz 5 лет назад +5

    Her husband just sits there while she is hysterical. Weird.

    • @trinitylane2202
      @trinitylane2202 4 года назад +2

      I thought the same thing. He actually looked disappointed.

  • @tracymcgrath1192
    @tracymcgrath1192 4 месяца назад

    Rip ❤🙏🌹

  • @farhatjabeen6776
    @farhatjabeen6776 5 лет назад +4

    Thank God I test negative for the genetic tests.

  • @Hawkman6788
    @Hawkman6788 4 года назад +5

    Do you make better decisions with more information or less?

  • @pattiepitts5893
    @pattiepitts5893 3 года назад

    So heartbreaking so sorry you will be a wonderful mommy no matter what. Never lose your faith beautiful girl

  • @me-xx2gl
    @me-xx2gl 4 года назад +5

    I just found this video. I have lived this nightmare through my fiance (now deceased) whose first wife died of the disease. Oldest child had it from about age 10. He passed at age 44. I saw the devistation of the disease on that family. Horrible. Having children without testing is holding a loaded gun to your child's head. This disease can be almost eradicated in 2 generations with testing, which has been a available for 30 years or so. Emotional, but it is a selfish act not to do it, which, by the way might be some of the first signs of impairment.

  • @ireneyoung8696
    @ireneyoung8696 2 года назад +1

    What a terrible devastating disease this is.I pray to God a cure will be found.

  • @deliciaford4343
    @deliciaford4343 2 года назад

    The song where the lady start singing about the stars in the sky is beautiful. Please someone tell me the name of the song. Thanks

  • @jessicafrerichs6227
    @jessicafrerichs6227 5 лет назад +3

    I have hd my dad died from it and im hope full fir a cure. If not my generation the next. Iv nade peace with my death wish iv been thru hell and back . iv had a rough life u could say and single mom since i was 14 i have 4 kiddos i didnt know anything til my dad died. Iv been apart of some trials and still invilved

  • @heatherclare5050
    @heatherclare5050 5 лет назад +16

    Don't understand why her mother didn't jump up to hug her when she got her negative results??

    • @markm.5756
      @markm.5756 5 лет назад +2

      I noticed the exact same thing Heather - no emotion or happiness from either of them - no hug, nothing.

    • @xz9855
      @xz9855 4 года назад

      Because they are calm people

    • @trinitylane2202
      @trinitylane2202 4 года назад +3

      I thought the same thing. Her husband didn't even look happy. He actually looked disappointed.

    • @standup2982
      @standup2982 4 года назад +3

      It was very odd, only her best friend showed any emotion. As a Mum of five myself I would have jumped up to hug her.

    • @alicew3563
      @alicew3563 3 года назад +2

      That was my thought too. I started crying myself, while watching her hearing the result....But I guess we are all different and show emotions differently. The video has quite poor quality on my screen, but I think I can see her mother crying quite a bit, and perhaps she got "paralyzed" in the crying.

  • @kihntagious
    @kihntagious Год назад +3

    Why is the reaction of everybody as if it was positive.?

  • @MamaAteistka
    @MamaAteistka 7 месяцев назад

    I am beyond happy for your results. I actually started crying.
    The only issue I have you mentioned something about praying before. So, you think that if you didn’t pray results would come gene-positive? Or what about people, decent, good people, who pray a lot, and still find out there are gene positive for Huntingtons or familial ALS? Come on, we know the prayers don’t work- if they did, they would be included as a part of the treatment/cure.
    I believe just few more years and we’ll have some treatment for Huntington (and ALS. I bring this disease to discussion because that’s the one has impact on my life😔)
    And you know, it won’t be Jesus, or Muhammad or Vishnu, or Zeus, or angel Moroni who is going to bring it to us on golden plate. It’ll be our brilliant, hard working scientists who will accomplish this. I just hope sooner than later.
    Once again, I’m extremely happy for you(!!!) and best luck to you and your family.

  • @shannajensen5030
    @shannajensen5030 4 месяца назад

    I think I reacted happier for her when they said her result than her husband did.

  • @ncreformist
    @ncreformist 10 лет назад +1

    does anyone know how much it costs to be tested for this disease? Is it covered by insurance?

  • @miriamcarroll4260
    @miriamcarroll4260 5 лет назад +3

    My father had HD and was a very violent , nasty person. Our childhood was full of fear. I just want to know if any body else’s parent with this horrible disease was violent as well or would my father have been like that without HD. Please please answer if you can help. It would make sense of my childhood if I knew he couldn’t help the things he said and did. Thank you .

    • @HDYOFeed
      @HDYOFeed  5 лет назад +2

      HI Miriam - anger and violence can definitely be elevated while dealing with Huntington's Disease, but everyone's situation is unique. The toughest part is trying to separate who your dad is/was versus who he is/was based on how Huntington's Disease is affecting his mind/body. It is not easy and one of the most difficult parts for young people in families impacted by HD. Please check out our website and email us if we can be of any assistance in elaborating on your question. info@hdyo.org

    • @miriamcarroll4260
      @miriamcarroll4260 5 лет назад +1

      HDYO thanks a mill for answering. I’ll check out your web site. Everyone says mood swings but my dad was all smiles one minute and punch you in the face the next. I can live with that memory if it wasn’t his fault, strange as it may seem. Thanks again🙂

    • @edwardscott3262
      @edwardscott3262 4 года назад

      My father was violent too. I don't think it was really him though. He left shortly before I turned 6.

    • @lindalee9177
      @lindalee9177 2 года назад +1

      My father was erratic, unreasonable, nervous, angry, lacked good sense, hoarded, and was very difficult. This was most apparent when I was a teenager. He lost his job but they suggested he see a neurologist and we found out he had HD. That showed me the reason for his difficult behavior....it put things in perspective, and I was able to forgive. I hope you can forgive and live a good life now.