Huntington's disease (HD), also known as Huntington disease and previously as Huntington's chorea and chorea maior, is a rare inherited neurological disorder affecting up to almost 8 people per 100,000.
Huntington's disease's most obvious symptoms are abnormal body movements called chorea and a lack of coordination, but it also affects a number of mental abilities and some aspects of personality. These physical symptoms commonly become noticeable in a person's forties, but can occur at any age. If the age of onset is below 20 years then it is known as Juvenile HD. As there is currently no proven cure, symptoms are managed with various medications and care methods.
Each child of an affected parent has 50% chance of inheriting the disease. It can take up to 15-20 years for the slow progression to take a persons life.
All funds raised on the day will be collected by the Huntingtons Disease Association (NSW).
Your donations will help with:
Huntington's Disease has always been a part of my family. My grandmother who had HD lived with us for a while when I was growing up and my mum cared for her. When my mum wasn't caring for her the realities of this disease were always in our home. My mum’s pain of losing her mum and her aunty to HD, as well as her own fear of what this disease would bring into her future, was always present.
My mum is now 52 and has Huntington’s disease. She has lived in a nursing home for six years. My mum was diagnosed with HD when I was 16 years old. In this same week I found out I was pregnant, so I can remember there where many tears shed that week…that was 12 years ago now and its been a very long and painful journey and one that I am still on. I have three brothers and myself who are at risk (two who are gene positive) and I have four children who are also at risk. We now face the reality that this could be our future...
My journey with HD has been a rather lonely one...losing my mum very slowly over the years has been heartbreaking and at times very devastating to my family. I have however learnt a lot along the way and in my search to connect with others facing similar issues I joined an online Internet forum www.hdac.org This forum is for all people effected by Huntington’s Disease all over the world. They have become like my little extended family and I have learnt a lot through talking with others and hearing there stories. The strongest thing I have received from this group is a sense of connection. A connection over great sadness and loss...yet a powerful connection which has offered me a space to learn, share and build friendships. Hearing other peoples stories and sharing in there journey relieved me from feeling alone and isolated...as I wasn't alone anymore
I met Renee (another Australian) on the forum, we both had a passion to do something proactive for the HD community and we soon came up with an idea to establish an Internet Forum for Australians. We hope to offer others the chance to make these connections and provide a space where friendships and information can be shared. www.hdaustralia.org