Huntington's Disease - The Impact on Young People
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- Опубликовано: 4 сен 2014
- This video gives a powerful insight into what it is like to be a young person in a family with Huntington's disease and clearly demonstrates the need for support services to help young people around the world cope with the impact of HD and flourish in life.
The 21 young people who participated in this video shared their own personal experiences of being impacted by HD and how having the condition in the family has affected many areas of their own lives. In doing so they provide an accurate and moving account of what it is like to be a young person impacted by HD.
Four families bravely share their experiences of living with Juvenile Huntington's disease. We advise viewers to be aware that this topic may be upsetting, if you need support email us at support@hdyo.org'
I'f you'd like to learn more about HD and JHD, please visit www.HDYO.org. If you'd like to help support young people, like these in the video, impacted by HD, please consider making a donation to HDYO here: en.hdyo.org/eve/about/587
My mom has it and it’s getting close to the end. It’s so freakin hard to know where she ends and HD starts.
Can completely relate with the young man, it is the worst thing to see them progressively get worse and worse. Leaving one to feel helpless.
I can relate to one and all........I have lost my whole immediate family except my maternal Grandmother to HD! I was tested and thank God it came back negative but, the unfortunate part is only my Grandmother and myself are left.
I also worried at the 50-50 chance of having it, it affects your whole life, thinking, etc.! I'm 42 and I was told forever to not have children but, now knowing I don't have it I'm starting my journey to trying to get pregnant. Unfortunately we have to go to a Fertility Specialist. I send my LOVE TO ONE AND ALL OF YOU! I know it's not easy and I know all to well! XOXOX
Thank you for sharing, Kristin! If we can support you or your family members in any way, please reach out via HDYO.org or info@hdyo.org!
HDYO Thank you so very much! It hurts so bad and I'm crying as I'm typing this because, I miss them so much and I lost them when I was young, my mother when I was 13. It is a horrible Disease and even though I have my moments of breaking down from all of the pain that it has caused, I would like to be there for others. If there is anything I can do as well I would like to do so.
We feel for you, Kristin. HD is not easy! We do have occasional ways to get involved so if you'd like, please sign up for our quarterly newsletter through hdyo.org to stay up to day on opportunities. Thank you!
Thank you so very much!
@@KK_wills_1 did you ever get pregnant?
I can totally relate to that becoming a parent for a parent
I understand been taking care of my mom for almost 15 years the last 4 years got really bad , but I did everything I could for her when everyone gave up . She's on medication she's not twitching she sleeps more I'm happy now I feel I accomplish something .
I love my mom and I would die for her , I pretty much showed it already
I went threw hell and back trying to get her to go to a doctor, she kept saying no and it kept getting worse . It's scary and it's a real thing
You have done amazingly Sean, carers give up their lives to care for such high needs, and thats particularly hard on a young person. I hopeyou and Mum have the support you need, and that you get time to enjoy living life for you, secure in knowing you have selflessly done more than most people ever have to.
I watch this and think of my kids, grown ups at such a young age. Thank you all for being so brave xx
My mom has it. It gets worse every damn day, but we’re getting through it.
We are here to help and support you in any way! Please reach out if we can help. info@hdyo.org
She will recover soon god bless her and your family
A big thanks to each young person involved in putting this video together. You did a wonderful job! :)
So hard, these people are admirable
May god be with all those with Huntington’s Disease and to those no longer with us Rest In Peace.
As someone who took care of my mom, (not HD) when I was ten until about 15 it’s a very intense thing to go through. It’s isolating and dysfunctional and unfair. I felt worried if I wasn’t there and therefore didn’t have a normal adolescence. It made me very angry later on that I had to do that. Years of therapy worked it out.
Congratulation forma your videos
Ive got it. Its shite.
❤❤❤❤❤❤
Well I finally took that major leap yesterday and got tested. So I may be sitting on a ledge soon.. kidding..😪
I hope you are clear.
Children should not be caregivers!
Try medical marijuana, it has helped a lot of people with HD