I am excited to be joining Scleroderma Australia as one of our Queensland representatives to further promote,
support, and foster understanding and research into this challenging and largely unknown disease.

In 2010, at the age of 40, I was diagnosed with Systemic scleroderma. The first symptoms were pain in my feet
and stiffening of my hands that came on, as I was recovering from viral encephalitis, which had left me with
relatively mild but still challenging cognitive impairment. My treating team at the time were rightly focussed
upon my acquired brain injury, but as that was improving with psychological treatment, my feet and hands
were just getting worse. I was formally diagnosed 3 months later and was referred to the expert team at St
Vincent’s hospital where I received the best of care.

Before Scleroderma, I started my working career in Melbourne as a live theatre performer, working on the
comedy and circus scene. Nothing like working with the likes of Billy Connolly to reinforce the importance of
humour in providing you with the courage and energy to keep fighting. I also played Clarinet and Saxophone
professionally on the jazz and musical theatre scene and was a Martial arts Instructor.

As I got older, I wanted to find a more secure employment so trained as a Registered Nurse, undertaking my
graduate year at Peter MacCallum Cancer Institute in 1997. The learnings gained about the importance of
open communication, honesty and kindness could not be understated. Working in an environment where
everyone knew that Cancer was the diagnosis gave permission for us to foster what truly mattered, and so I
can happily say it was the most joyful place I ever worked.

Through-out my nursing career I have been fortunate to work in many other areas of nursing including rural
and regional settings. I completed my Nurse Practitioner Internship in 2010. It was then I became unwell with
Scleroderma so I had to reinvent myself again. I could no longer work clinically due to my poor hand function. I
had developed numerous ulcerations along both arms and couldn’t stand for longer than 10 minutes so was
unsafe within the clinical environment.

I therefore moved into Education, firstly with the Department of Health in Victoria and then Federation
University where I managed the Nursing program. Still able to give back, but through supporting the education
of young health professionals.

In 2019 it was becoming clear that I could not continue working due to Scleroderma and the complications
that ensued, so as a family we made the big decision to uproot our world and move to a warmer climate. My son
was in year 10 so could move to Queensland to complete his year 11 and 12. Whilst he didn’t want to move
away from friends, he had also grown up experiencing how the challenges of life can hit you out of the blue,
and rather than say “why me” it is more useful to say “Bugger, OK what can I do to help?”

On December 23rd 2019 we arrived in Maleny, Sunshine Coast. We being my Mother, husband and son.

In the space of 6 months we had sold two properties in country Victoria, driven through bushfires and bought a home where we could live together as a family.

So, three years of COVID later, I am on a disability pension, and an NDIS participant. My son is away studying at
University in Canberra. I am supported by my Mother, Husband and a small group of friends. I can rejoice in
the good fortune that I have had despite my diagnosis, the love of a family and financial security which has
allowed me to better negotiate the challenges that Scleroderma poses every day.
​
I am excited about the next stage of my journey, working with you all, as my Dad used to say, “As we travel the
broad highway together”.