Huntington's Disease - Mandy's Testing Video

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.

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.

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

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

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. ❤❤

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

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 :)

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.

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

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.

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.

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

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

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

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

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.

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.

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

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!!!

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