Living with Juvenile Huntington's Disease

this is so sad. this runs in my family. i was so scared id have it but when i got older my parents told me im adopted and thats why they didnt have biological children. my heart goes out to anyone suffering from this or anyone they love suffering from it.

My parents both had HD! They adopted me and my 3 siblings. I am extremely thankful for that. Sadly our time with them was too short 😢

I don't think I could bring myself to purposefully have a child if I had the genes for hd. I am so glad for the kids in this documentary that have wonderful families/good support systems

My mum has Huntington’s disease. I’ve looked after her since I could remember. I’m 11 and I still help her with things from feeding her to helping her shower and getting her to bed. Only people who look after people with Huntington’s disease understand how Hard it is. **UPDATE! My mother is now in one on two care meaning that she is getting more then any support, looking after and support then I ever could, I miss her and I still see her every weekend, it sure was tough and I don’t know where god will take this next but I’m so grateful and thankful for all the kind words and support even whilst 2020 is going down hill I hope you kind souls won’t go with it.

My cousin has JHD he was diagnosed quite young and is now 19. We have been told he is now in the "last stages." We have to spread more awareness about this, alot of people haven't even heard of Huntingtons disease, this video is eye opening 💙

My friend died at 26 with this. At first we thought she was drunk or taking drugs. It was devastating. She ended up totally dependent in an elderly care home. Absolutely horrendous. I truly believe in assisted dying and I know my friend would never have wanted to die like this.

I have a number of health conditions that are inheritable. While I appreciate these parents’ struggle and optimism, I think until you know what it’s like to truly live with chronic, debilitating symptoms you aren’t fully informed or equipped to make the decision to have a child. All I ever wanted was to be a mother. And yet I won’t in this life. Because I know I’m a better mother by not having children, including by adoption. I have watched my father nearly die and suffer so many times as a child, and now I have gone through the same. I can add a broken heart to my pain but I will gladly carry that burden myself and not send down a family curse. This of course is only my opinion, and everyone has a right to their own without judgment.

There is a big problem of denial in many HD cases and that's also one reason why children with the gene are still born.

HD is the reason I don't have kids. I wouldn't risk it. 3 of 5 of my grandma's kids got it, luckily not my dad. My dad's cousins also have a high rate of HD, over 60% have it.

Honestly, I can’t emphasize how important genetic counseling is if you’re planning a family. It’s expensive, it’s not for everyone, but if you have a known genetic disease in your family *please*, as a person who now lives with an incurable genetic condition, get genetic testing done.

my grandfather passed regular hd onto my dad and uncles without their knowledge because my grandfather wasnt in their life. my dad and uncle got hd later in their lives, after they already both had children. my family became aware of it being in the family when they both found in their mid 40s, when my cousin was 25 and already had a child with his girlfriend. then after my cus had a child when he was 25, him and my 25 year old brother both got hd. now my brother and my cousin are both in their late 20's with extremely bad huntingtons. my other brother who wasnt showing any symptoms , decided to get tested for it and tested positive this week. that makes three generations of my family tree that all happened due to lack of knowledge about this disease being in our genes due to my grandfather with hd passing away before he could get hd. this disease has taken my dad, uncle, both brothers, cousin , and maybe me and my nephew... it has honestly completely destroyed everyone around me except my mom, who has horrible depression from losing everyone

As a child I always knew I'd hit the lottery. What I didn't know is it was the genetic lottery. My mother is the sole survivor out of 6 siblings, all who passed away from HD. SHE TESTED NEGATIVE, SHE WAS THE CAREGIVER. Id have to say that's like hitting the lottery but the winnings DON'T out weigh the tremendous loss 😢. I am thankful my mother is here I just wish she was too.

I have a genetic condition, bedridden at 44yrs of age. My son inherited it and has struggled since 8yrs of age. I didn’t know I had this when I made him, and once I learnt I did have it I didn’t roll that dice and risk giving it to another person. To say that you are going to have that lovely little baby, and have a lot of time with them, god that infuriates me, this is a human being, not a puppy, if you have a hereditary genetic condition that destroys lives, don’t have children!!!!

My boyfriends father had HD. He had FOUR children knowing that he had it. He passed about 2 years ago, rip. But THANKFULLY my boyfriend was tested about a year ago and he does not have it. ❤️❤️❤️ his two sisters also do not have it!!! It’s a miracle. He has a younger brother that is not in his life, I don’t know if he is aware that his father had this disease but I pray he is as lucky as his three siblings. Rest In Peace to those that have died and had to go through this hell. ❤️❤️❤️

I have tears pooring down my face. HD has now finished for our family. My baby brother with juvinile HD is now in heavens and was the last person in our bloodline to carry it. Strenght and courage for all the Warriors out there and their families. Please if you are at risk please check yourselves and for no reason do do procreate unless your are sure of being HD free. This is our only hope for the moment of putting a halt to this horrific disease

My stepdaughters mother developed symptoms of Huntingtons disease in her mid 20s. She got into a few car wrecks one after another, and she went downhill rather quickly after her diagnosis. Her husband ended up putting her into a home because he was unable to take care of her and their 2 young daughters while also working full time. She was only at the nursing home for a little less than 2 weeks when she hung herself from a pipe in the bathroom. And you know what my first thought was? I probably would’ve done the same thing. And now both of her daughters, in their early 20s, are showing symptoms. One has tested, found out she’s positive and she’s doing every kind of treatment she has access too. The other daughter is addicted to drugs, living in the streets, in and out of jail and in complete denial. This disease is so fucking horrible. The way it tears apart families is what makes is so much worse to me than others.

I really cannot believe that someone would play russian roulette with a child's life knowing they carry such an awful genetic disease.

I was a nurse for 33 years. The first time I took care of an adult with HD, it exhibited horrible symptoms in the patient. It is very heartbreaking. But, for children, it is extremely SAD. I always gave my all as far as great care, empathy, and sympathy. God bless the families.

They had children knowing the risk 😱

What is really heartbreaking is that some of these people knew it was in their family, and they still had children, as if they thought they would take a risk and put someone through that, it does not matter how positive their lives have impacted others, it is their lives, and no one has the right to create life, making a decision, knowing they could pass this on by chance.