My Story
My introduction to Huntington's disease (HD)
My introduction to Huntington's disease (HD)
Many times your life experiences help to prepare you…...for what your purpose is. That is what happened to me.
I always wanted to be a vet, instead I became a nurse, with a love of animals. I have done many and varied things in my life which when I look back, l realise have all led me to where I am today. I feel fulfilled helping people.
My introduction to Huntington's disease (HD)
My introduction to Huntington's disease (HD)
My introduction to Huntington's disease (HD)
2004 redefined my life. I chose to revisit nursing and had the honour of nursing a gentleman with a disease I did not know existed. He was very tall, he could not stop moving and most of the staff avoided contact with him out of fear as he seemed scary. I saw a person, not a disease. I built up a rapport with him and I came to appreciate the gentle giant behind the constant movement of arms and legs. His name was Bernie and he had Huntington’s disease. Bernie passed away that same year while I sat with him. I had no idea how meeting Bernie was going to change my life.
A change in direction
My introduction to Huntington's disease (HD)
A change in direction
I decided I wanted to work principally with people with Huntington’s disease and very quickly learnt about an incredible community who have become my second family. The challenges they face on a daily basis cannot be put into words. They are truly amazing people.
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In 2014, I was approached by a woman whose son had HD. Rena asked “if I would fight for the HD community and stop them from falling even further through the cracks.” I didn’t know how to do this, I just knew I had to do something about it.
Making a difference
My exciting next challenge
A change in direction
I thank Bernie and Rena everyday for making me aware of this insidious disease, this wonderful community and for their friendship, support and inspiration. I was given a precious gift ……. the gift of making a difference.
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Raising awareness and support for those with and impacted by Huntington's disease is now my life’s mission and I am seeking others who want to make a difference!
My exciting next challenge
My exciting next challenge
My exciting next challenge
In 2020 amidst Covid chaos I was extremely lucky and honoured to receive a Churchill Fellowship. The subject of my Fellowship is
'addressing the gap in care for Australians living rurally and remotely with Huntington's disease'.
When Covid allows I will travel to Peru, Chile, Brazil and Venezuela.
You may ask why there?
South America has the largest population of people with HD in the world. The care of and interaction with HD families is very much community driven. This is an area we struggle with in Australia. To be able to connect, learn, swap knowledge and build relationships is a great way to start bridging the gap here in Australia.
This is a journey I truly look forward to embarking upon and I thank the Churchill Fellowship Foundation for giving me this opportunity.
Michele Giles-Clark
Churchill Fellow 2020
You can contact me at:
michele@huntingtonssant.org.au
