Huntington's Disease & 5 Girls



my parents sat my brother and I down when I was about 11 and told us that my mom had Huntington's disease I remember I had just gotten back from dinner with my family and I fell off of the back of my father's car playing with my sister and my mother tried to help me cuz I was crying and my knee was bleeding and she couldn't she had forgotten what to do and how to take care of me I think I was ten years old and I just didn't really understand what was going on because I didn't really recognize that my dad was sick and they tried to tell me about what Huntington's disease was and that he was gonna start changing and not really acting like himself anymore so far around suffers from a lot of choking problems like difficulty eating or short-term memory loss has been really big lately and like fine motor skills she basically can't write anymore my dad that raised us had damini's she's changed she's not the same person he's he's gotten angry sometimes one day he's fine the next day he's not slurring his words at all but it's just not that same dad that was you know extremely encouraging at all of our volleyball matches wanting to do family dinner all the time it just slowly is just watching him degress into somebody that we really don't know I think with Huntington's disease it changes you entirely even if you don't want it to I've tried living my life in the ways that I would want to live my life if Huntington's disease never had entered my family but because I'm always thinking about that I know it's so consciously or consciously changing how I've made my decisions whether I should have gone to graduate school or not or moved to San Diego away from my family or just to falling in love and wanting to get married I felt like having kids is the number one thing in my life that's always been my mom so I said you've been put on this earth to be a mama and so for me this I felt like is my life over do I want to find out if I'm I mean I guess in a little bit of a dramatic sense is my life over the only thing I fear it's just being alone you know not having somebody because I wouldn't want to put anybody through what I've gone through so I couldn't expect anybody to love me like my father left my mother I always thought that once I turned 18 I'd want to go out and get tested right away and know everything so I could plan but then went to the counselor turned 18 and then my birthday came and passed and I still don't know I've decided not to get tested at this moment though there's been times where I just want to get up and drive to the closest place and find out immediately what gives me hope is the involvement that my family has with in HD community and how many people that are slowly learning about the disease I think awareness is the most important thing we need to get our voice out there and get our message heard we are taking steps towards a cure I don't know if it'll happen in my generation in my lifetime but we are so close that it's possible for maybe my children's generation what this does to people and their family and stuff I just know that there's got to be a close close close in to this I hope that not just for myself but for everyone impacted by HD that we find a cure and if not find a cure if that's not possible just to help prolong the symptoms from starting finding new medications it's hope with the symptoms so that people who have it can live their lives as long as they possibly can the way they want to

35 comments

  1. I was diagnosed with HD at age 18 and I’m 19 now it’s so hard but we’re getting close to a cure!

  2. Reading comments on here from people advising people who may have a chance of getting HD.. Rather than respond to you negative thinking idiots.. May I suggest you do some research before you pass judgement on this.

  3. This is a tragic disease. I'm embarrassed that I didn't know just how horrible this disease is when I was just told a childhood friend of 30 years is living with H.D . for quite some time. I'm overwhelmed and hugely saddened by the experiences and stories I've watched these last few hours about H.D.

  4. My wife is getting ready to take a test because my wife's mum got it and her pop died from it too sad. So we know its a protein that hitches a ride on a chromozone the question is how do we drop it off at a toilet break then blow up the toilet with it inside hmmmm?

  5. Life is all about love and compassion, don't you ever give up, I'll be always close by my dear❣️

  6. My mums friend Roni has HD and I've grown up with her, only 2 years ago she was still quite lively and talkative, she had very obvious ticks but she could still speak, but a small accident took it away from her, she's now bed bound and unable to speak, but she understands everything, and that's heartbreaking, Roni is a lovely woman and she doesn't deserve this, seeing her in that bed broke my heart, she's now considered in the final stages and I'm dreading the day we hear that she's gone, she's such a lovely woman

  7. I belong in Army family & my husband sarve Huntington desases in last 10 years. I live in pakistan.
    Pakistan mei is desases ky bary mei bilkul bhi knowledge nhi hy, mary husband luckly sarve in Pakistan Army. Or jo doctors hum ko Army mei mily wo bohat he competed hain or mujy first time mary husband ky doctors ny he advice kia ky is desases ky bary mei study kro, or jasy jasy mei ny is desases ky bary mei study kia tu first time tu mary mind ny is ko expect he nhi kia, phir ahista ahista mary mind ny is ko expect kia but abhi bhi mujy kbi kbi bohat dir lgta hy is desases sy. Its a completely personalty disorder desases.

  8. I wish all their problems go away they need all the support they can get if I knew them I'd help as much as I can even if it means to marry 1 of them just feel like giving my all to help them pray to God they have the least difficulty of helping the parents live a stress free life love all over u girls om here if u need me xxx

  9. If I were in their situation, I would get tested at 18. If I'm positive, I would do everything I have always wanted to do, tick everything off my bucket list, until I develop symptoms. Then as my symptoms get worse, I would probably jump off a bridge.

  10. It's been in my family for a very long time. My great grandma had HD so did my grandma and then when he had my dad and my aunt he passed the HD gene onto my dad but not my aunt. So when my dad had me and my older brother he passed the HD gene onto us. So it's been in our family for a very long time. But my dad had no idea he was sick with this disease when he had me and my older brother.

  11. Please google PETER'S PROMISE HUNTINGTON'S DISEASE! It's ORTHO MOLECULAR MEDICINE that can completely reverse symptoms!!

  12. I'm 28 and went thru this with my mom she got sick when I was 11 and she passed when I was 22 its a horrible disease now my oldest brother is showing symptoms of it… it really fucks u up seeing family go thru this

  13. Like, it would be so much better if we could just cure (or greatly mitigate) Huntington's Disease. Until then, so very sad.

  14. Thank you for sharing your story with us all with such courage. I hope you have all the support you need. 😔 I was diagnosed with HD around the age of 27. I've just turned 29 and I'm already having to use a wheelchair and I feel like a tired old woman… I am also suffering from post traumatic stress after the loss of of my dad from HD. The main things that help me get through each day are my friends, my mum who prays with me and my faith that Jehovah will will wipe out every tear from our eyes cos he loves us. 😌Jw.org

  15. My brother is diagnosed at 67 with symptoms but for me at 63 and no symptoms I have dodged the bullet. Nevertheless I think epigenetics dictate that diagnosis is not a verdict and I think diet can be a solution as Dr. Mary Newport has done neurological treatment of her husband with the degenerative brain disease that is Alzheimers. In her book What if there was a cure, she has shown success by way of diet and long chain fatty acid action in brain metabolism. It need not be a given sentence with no cure.

  16. my mum has HD and is starting to get to the serious part of the disease. I'm 15 and and not sure if I've inherited the gene….
    it's hard to see my mum like this, and hope I won't inherit Huntingtons.

  17. They actually have mechanisms to sort out sperm and egg cells so that if someone has Huntington’s disease, they will choose a sperm or egg that is not carrying the Huntington's gene. Because of ethical issues, it might not be available in Canada, but it is in the US. Just thought I'd share this info (I'm learning about it in university).

    Also, My thoughts and prayers go out to everyone who suffer's from Huntington's disease, as well as friends and Family of the patients. I hope a cure will be found soon.

  18. my mother has this disease as well as so do my aunt's and uncle… its so sad see them decline.

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