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4 Nov 2017

Issue 98, September 2007

HD Australia: An Internet forum
for all Families effected by Huntington's Disease

An internet forum has been established for all families living with the realities of Huntington's Disease. Two young women, whose lives have been effected by this disease, (their stories you can read below), have created this site for all families, relatives and friends effected by Huntington's Disease. It is a place to meet others, share experiences, ask questions and be able to share the valuable knowledge that families hold in regards to living with this disease.

The Internet forum will also be a way of accessing new research articles, provide links about Huntington's Disease and share up to date information.

All you need to do is go to the home page at www.hdaustralia.org … go to the board navigation section and click on forum, register yourself in the registrations section and you are part of an online HD group!

Michelle's story
My name is Michelle and I am 28 years old. I live in rural NSW. I am very excited to have been a part of creating this forum and hope it offers families a safe place to share their journeys with Huntington's Disease

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 it's 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 their 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 people's stories and sharing in their journey relieved me from feeling alone and isolated...as I wasn't alone anymore

When I met Renee 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.

Renee's Story
My name is Renee, I am 27 years old and I live in Sydney. My journey with Huntington's Disease is just in it's infancy with my step father diagnosed only 3 years ago. His diagnosis was the first we had heard of Huntington's Disease, let alone that it was in our family.

Since my father's diagnosis we haven't really known what to expect. We've seen many ups and downs and it's been an enormous learning curve for us all.

My mum cares for my dad, who is turning 50 next month. I have a brother and sister who are both at risk, but have decided not to be tested at this stage. I'm the only one in the family who isn't directly affected by HD; I'm not a carer or at risk of inheriting the disease so it's taken me a while to determine what role I would have in a family that has changed forever.

Recently I have felt like I have found my place. I see myself being able to provide emotional support for my mum and siblings. Although I can't always relate to the emotional strain of being a carer or having an at risk status, I can provide an objective point of view and a shoulder to cry on in the hard times … and boy will there be hard times!

My next step was to go in search of as much information and resources as I could find that would help as my dad's disease progressed. The most helpful resource I found was the HD Advocacy Centre website (www.hdac.org). I believe the wealth of knowledge and support that people in similar situations can provide each other has been so helpful. Connecting with people, sharing experiences and stories has helped me to realise that there are other people out there in the community who are going through the same things and that we aren't alone ... even though we all feel like it sometimes.

Michelle and I decided that we wanted to localise this knowledge and support in Australia. It is something that we feel most passionate about. It is my hope that we can help people recognise, as we did, that there are others out there going through similar experiences. We developed HD Australia to provide an online forum for people to find people who they can relate to, find a shoulder to lean on, to share the good and not so good times, and access relevant advice. We know that although doctors, nurses and specialists provide invaluable support, it is the stories and experiences of those affected by HD that can sometimes be the best resource of all.

Please join us at www.hdaustralia.org

Acknowledgement: Gateway Vol 10 Number 2 Autumn/Winter 2007 - AHDA (NSW) Inc


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