My name is Emily and I live in Melbourne, AU. I moved over from NZ in Dec 2015 with my long term boyfriend so we have been here for just over a year now.
My test came back positive yesterday (42) and it's all still sinking in. I think I had prepared myself quite well so I'm actually okay but it is a strange thing to know when nothing may change for the next 20+ years at least - I'm 25 and my Dad did not get diagnosed until 69 (although I know that I may be completely different to him).
I'm interested in meeting other people in Melbourne who are affected by HD and have also perhaps done the presymptomatic testing and come back positive. Is there anyone around? Most of the posts on here are old so I'm unsure how active this form is.
I look forward to talking to someone :)
Welcome to the HDYO Forum. Thank you for sharing your story. A great way to meet people is by attending local chapter meetings and this past January, HDYO hosted a youth camp for Australia/ New Zealand. Here is a link your association - https://www.huntingtonsvic.org.au/
Hope this helps from Canada.
Welcome! As Chelsie mentioned, we did a HD youth camp in Brisbane this January for young people impacted by HD in Aus and NZ, aged 15-25. We have essentially confirmed another camp for Jan 2018, just finishing up a few things, but that would be a great chance to meet others across Aus and NZ. 50 young people attended the last one, all for free. Don't worry about potentially being 26 at the time of camp, it is not a problem to apply and we would encourage you to. We know some young people in your region, we could ask them if they'd be happy to have contact with you? reply here or email me at email@example.com to talk more
Welcome across. I too found that most posts were inactive, that why i thought i would at least say hi when i read yours.
I was diagnosed about a year ago, same number as you. I am down in TAS.
I also wanted to ask Matt a question re the CAMP for 2018. Is there any updates or details as i may be keen to look at applying if i can. I will be the same though, 26yrs old.
Yes camp for Aus and NZ 2018 is almost confirmed, we haven't signed the grant agreement yet, that's the only thing stopping me saying it is definitely happening. I expect we will open applications in June or July. You should be able to access the application from our homepage during this time (and for 3 months afterwards) to apply, we will also have more details about the camp for you to check out around the same time. If you are signed up for our newsletter you should see an update in the summer about camp too. I would highly recommend the experience!
If you check back on the site in June/July for the Aus and NZ camp details they should be up. If not June then definitely July. If unsure just email me at firstname.lastname@example.org and I will be happy to help.
Welcome to the forum! Unfortunately, I am way over on the other side of the world, but just wanted to pop by to say hello. Sending you all the support and good vibes right now. What CAG repeat was your dad? Curious because my dad is also very late onset and it seems like those of us with that story are few and far between.