Hi my name is Naomi, I am 24 years old and live in NSW. My mum found out she had HD when I was 10. For a long time, I couldn’t understand what was happening to her. She wasn’t the mum I was used to and I often felt really sad and alone at the thought of losing my mum to HD. It was a difficult time to start to look after your mum when all you really wanted was a mum to look after you.

At 18 I felt that I had to be tested for HD so that I had some direction in my life. The test showed that I wouldn’t get HD. I ran away for a while as I tried to work out what this meant for my life. I now cope with HD in my life by fundraising. I find it to be one of the positive things I can do for other families in the same situation. This helps me not to get so angry and worked up about what is happening to my mum and what might still be in stall for my family. My younger brother who is 21 has decided not to be tested yet, he is just happy doing all the things he loves in life like surfing, hanging out with mates and travelling.

I’ve met some pretty amazing people over the last few years and it has really helped me get through some of the low times in my life. I hope that "Our HD Space" can be a place where you too can meet some amazing people too!

Hi. My name is Tony, I'm 31 and live in Victoria. My family found out about HD when my Dad started acting weirdly when I was in high school. Finding out about HD answered some questions (what is wrong with Dad?) but also opened up a whole lot more questions (oh man, what now?).

I got tested when I was about 18. I tested positive for the HD gene, which means I will get HD. I am married now and have kids. My dad died in 2008.

Living gene positive can be pretty full on at times but I think you can manage it and get through the really bad times. I am an angry/action kind of person. HD makes me angry and I think it sucks that people have to have it and wish there was a treatment or cure. In the meantime I think the best thing we can do is to get together and share and help each other through. 

To me "Our HD Space" is great as it gives real information and puts people in touch with each other, to let us all know we are not facing this alone. It is also good for me as it makes me feel I am doing something.

Thanks for visiting!

Hi. My name's Michelle, I’m 30 years old and live in NSW. My mum was told she had HD when I was 15 years old. I didn’t know anyone else living with this disease when I was growing up (other than my family!), and I used to feel pretty lonely and worried about my mum. So a few years ago I set up an online forum (www.hdaustralia.org) and I now have heaps of new friends! We talks lots about HD, have held 3 fundraising concerts (www.adayinthevines.com) and have lots of good times together!

My mum has lived in a nursing home for 9 years, and it can be tough but we have some very special times too. I was tested for the HD gene two years ago and I was negative, which means I won’t get HD, however my three brothers are all positive for the gene so HD will always be a part of my life. I’m passionate about helping people and being involved in the HD community, and hopefully making things a little easier for people with places like "Our HD Space". I did a story for Marie Claire a few years ago which you can read via the HD Australia forum if you would like to know more about my story.

Welcome to Our HD Space!