Torofy Blog

Depression and Heart Disease

Huntington’s Disease – Mandy’s Testing Video


I run because it helps me feel at peace It lets me shut down from the rest of the world I need to take a break from the decisions that I have had to make lately Deciding if I want to get tested for Huntington’s disease has been a decision that has been weighing on my mind for some time now I remember I was overhearing my mum talk to a relative who wanted to come to visit I don’t think I was surposed to hear the conversation because she mentioned something about my dad I knew something was up, I remember talking to her about it, trying to get it out of her and my mum didn’t want to tell me, she didn’t want to worry me but eventually she did and I just remember going to the book store and looking up what Huntington’s disease meant and reading the paragraph that I had a 50/50 chance if my dad ended up having this disease I have been to a few conventions and I hear young people talk about as soon as I get 18 I am going to get tested I got to know, I got to know But I always thought, why do you have to know? Why not try to put it to the side and try to live your life the best you can and really only test if you absolutely need to you can ever go back, once you get tested you can’t go back December 3rd is my 2nd appointment to meet with my doctor to go over the exam and get the blood test I think about it every day I think about being in the waiting room I think about her opening the door Calling my name out, and going in there and I am so scared that if I answer something wrong or do something odd she will think that is a sign, that’s a symptom This isn’t fair but what is fair? I’m grateful that, even if I did test positive I know that my life is worth something I know I have made a difference in people’s lives For me that is worth it, if I can tell people my story so that things may be a little easier for someone else That’s really why we are here Huntington’s disease is a family disease It’s a neurological disease, it impacts the person in many ways cognitively, emotionally, psychologically This disease has impacted my family unbelievably This disease can start at any time If you accidently trip, spill a glass of milk, whatever it may be… if you check things 5 times to make sure the door is locked, you wonder is this the beginning when I was 17 and we first found out about my dad the doctor told me if I got pregnant it would be ok if I had an abortion so that is something that is weighing on me the difficult choices, if I was positive, and I got pregnant and we found out it was positive then would you have an abortion? I don’t know if I could live with myself for that I want to have kids I think I would be a good mother and I know my husband would be a great father But we just got to get creative and we got to pray, figure out what is the best thing for us I would love to have a baby one day He is used to tell me, people with HD can get quite repetitive, so he used to tell me over and over again that he loved me He wanted to make sure that I knew, I am grateful because those are the times I remember fondly of him Hi dad Just wanted to come and bring you some flowers I miss you so much, every day and I know that you are looking over me, helping me through this very tough time, I know you wanted to be here to see me get married, to see me have a family of my own I want you to know that you are in my heart and this is the reason why… I have made my 2nd appointment for the test, I always wonder what you would say would you tell me to get tested or not? I know you were so scared, that it would actually happen to us But I know that you will be watching over me when I go in there I just have faith and I’m staying positive and that is is going to be ok They are going to find a treatment… I love you so much You are always in my heart This is my best friend, Melina. Staff: nice to meet you My mum, Barbara, and husband Jeremy So your results came back… and you will not develop Huntington’s disease

79 thoughts on “Huntington’s Disease – Mandy’s Testing Video

  1. 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!!!

  2. 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.

  3. 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

  4. 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 =).

  5. Wish I was lucky you everyone though I didn't have it but I new had a feeling I did I got test a few mouth back now I didn't cry when I got told or that weird but I cry later that night I got a little boy I just feel bad he got to go though everything I when though with my mum :'(

  6. 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

  7. 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

  8. My mother has hd. I have a son and I didn't not get him tested. I want that to be his choice. When I pregnant that stayed on my mind. I was thinking I was selfish to have a baby knowing he could get hd. Then I started thinking that I'm glad I'm alive knowing everything that could happen. I don't regret having him. He's my baby and I'll be here for him through it all just like my mother was with me. I was 13 or 14 when she got tested. I was devasted when she told me. She told the same day she got tested. I couldn't be there for her when she got tested, because I had to go to school. Which I'm glad she waited to tell at home with just me and her. Rather than being up there and knowing and them ppl I didn't know would be around. I was living with my father she called me after I got out off school. She told she would have to tell me when I got there. I knew then that she had it. There was not doubt my mind that she didn't have it. She took me to her room and told me. I just had to go outside and just get some air. She lived with my uncle and aunt. My cousin came and there and we sat on the ground and he asked if I was ok and if I wanted to talk about it. I told him no. We just sat there very quietly until I was ready to go back in.

  9. 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

  10. 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.

  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.

  12. 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…..

  13. 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.

  14. 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.

  15. 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.

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

  17. 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

  18. I been thinking about getting tested but I have a son w short gut syndrome and can't work even as a newly single mother after a four year relationship and idk if medicare covers genetic testing

  19. 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 🙂

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

  21. 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

  22. I have hd as well i am a navy vet 26 years years old. Mother was the carrier and i was positive 2 years ago i know exactly what you are going through but noone gets out of life alive so live great now jump from planes drive fast cave dive shoot guns have ur bucket list overfill god bless you

  23. 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. 🌺

  24. Huntington`s is a monster. I am going to beat the living daylight out of that disease. I beat this disease to a bloody pulp and then I will shit and puke on it. Oh , how I hate this hellish mothball of devil outburst

  25. 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

  26. 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.

  27. 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 .

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

  29. 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. ❤️

  30. 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.

  31. 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 .

  32. 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.

  33. 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…

  34. I wouldn't even consider having a baby if this disease was in my family, even if I tested negative , I wouldn't wish it on any one. I'm currently nursing a lady with it and it is truly heart breaking watching her deteriorating month by month

  35. when i choose to get tested and see if i got it from my mom, the day i was going to get the results i woke up just with this deep gutting feeling like i already know how its going to end, that i would test positive and i had this feeling all day till i was in the room with my counselor i had to get accepted for the test, and the doctor told me it was positive and as soon as i heard that it went away and i just went into a mode where everything was a blur except my thoughts on being positive with this disease and what it would be like after seeing my mother struggle with it.

  36. 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

  37. 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.

  38. My aunt and uncle adopted the child of a woman with Huntington’s… they refuse to get him tested or tell him about it. If it was my kid I would want to know so I could plan for their future, like put money for care aside or something. But I get that it’s hard to make that decision because it’s essentially a death sentence at this point. Hopefully by the time he grows up it’s not.

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

  40. Could the physician draw the answer out any LONGER for this brave family? Shake another hand, platitudes, whatever? Why the woman did not walk in the room smiling broadly at the very least I cannot fathom. The look on her patient’s face before she got the results said she obviously believed she was positive for HD, no doubt partially based on the neurologist’s behavior. One might think her doctor enjoyed holding everyone in agony. (I’m retired from the healthcare field. I’m not unfamiliar with physicians’ interactions with their patients.)

  41. Poor me video!! Stop fucking whining about this shit. I have was diagnosed 6 years ago with Huntington's, and ADD/ADHD, COPD, PAD in both legs, Depression, Anxiety disorder, Type 2 Diabetes, and I still drive my wife to work and back every day for the past 8 years, I still have to clean our house, and still have to mow the lawn, drive and do our laundry!! Suck it up america, life sucks…

  42. 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 .

  43. 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 💜

  44. If you have a parent (or grandparent) with the disease and do not want to get tested. DO NOT have children. It is x
    Currently the only preventative.

  45. 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.

  46. I also just found out about a woman whose mother and brother died of the disease. I had talked to in earnest about 23 years ago about being tested. Lost track of her. I just discovered she married and had 2 children. Now she has it. Horrible that she passed it on, even when she said she would get tested before she had children. She joined the military at 17. Her letters home started making less sense. She could not pass a test for advancement. Dad (now deceased from diabetes) was pretty sure she had it. He watched his wife, one son and in-laws go through it. What I am seeing in these vids, and by personal experience, is that the ones who end up with it are the ones who will not test. Intuition perhaps, or is denial in very early stages part of the disease. Judgement is one of the first things to go. So sad for the test.

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