Being young in a HD family can be pretty tough at times. Although this forum is for members over 18yo, we hope this information sheet might be helpful for the adults in a HD family to read through and the link can be shown to any young people in the family who you think may benefit.
What experiences have you had as or with a young person, or what advice would you provide?
This is a fantastic resource.
I remember what it was like growing up as a chid in a HD household. It was scary and stressful at times, and this would have been great info to have!
I agree with Sally. Growing up in the 90s with few resources was incredibly stressful and scary.
Even though the same level of support wasn't available back then, I built a support network with family, friends, and school.
Dad and I were very close and supported each other, and I was lucky to have a counsellor at school and some wonderful teachers. My friends were fantastic and a I became a surrogate daughter to several mums!
However old you or your kids are, it's such a difficult thing to go through. Make the most of the support that is available.
Check out: Huntington's Disease Youth Organisation
These guys are amazing with their support for kids, teens, and young adults.
Great progress has been made in the knowledge of HD and with resources and information to assist younger people in HD families.
In earlier years younger people in pre symptomatic HD families may have consulted competent, well intentioned but ill informed local healthcare professionals about HD in their families.
Younger people may have been advised by their local healthcare professionals that it is unlikely or even definite that HD is not in their family.
Decisions may have been made on the basis of this information and advice resulting in life changing consequences.
New and accurate information and how to access it is helpful to the HD community.
HCC is not a crisis service so if you require immediate support and/or feel in danger or unsafe, we recommend that you please contact 000 or one of the following crisis support services.
