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 firstname.lastname@example.org 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 email@example.com 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.
Hi Julianna, I'm sorry that it has taken me a long time to get back to you! My computer is broken and it won't let me reply to the forum comments on my phone.
My Dad had a repeat size of 41. My Neurologist and Genetic counsellor both said that the number is almost irrelevant (unless it is very high) as people can have the exact same number and develop different symptoms or develop them 20 years earlier/later. They think that my Dad may have developed later because he had a very physical job and there is a lot of theories at the moment that physical exercise is the best way to prolong the onset of symptoms. Hope you are well!
Hi Matt, thanks for letting me know about the camp. I'd definitely be interested. I just met my Neurologist and Clinical Nurse today and they are trying to set up a social group for pre-symptomatic Huntington's patients in Victoria (AU). They don't have any funding though so they're sill trying to figure out how it might work.
Hey there! Thanks for responding to my question. I have gotten the same information from genetic counselors here, but am completely type A, so I had to ask. Thank you for telling your story on this forum; as someone who will go through the testing process soonish, I really appreciate reading about different experiences like yours. I'm glad to see that there are things happening in Australia. Come visit all the cool kids in North America, as well!! ;)
Hi Emily -
Your post really resonated with me. I'm also 25 and I tested positive (41) about 6 years ago, when I was 19.
My diagnosis felt extremely isolating because neither myself nor my genetic counselor were able to find anyone my age going through the same thing, and I eventually just gave up on finding someone to connect with. I've been in your shoes - I know how much it would have meant to me to have someone my age and in a similar situation to talk through/vent everything with.
I live in the US, but would be more than happy to chat via email. If you want to connect, send me a private message and I'll give you my email address. Hope you talk to you soon! :)