Tara Haneveld - President
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”.
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”.
Juliette Warder - Secretary
Hi there!! I'm Juliette, and I settled in the Sunshine Coast Hinterland of Queensland in 2017 after a busy 32 years working in IT in both Sydney and England.
My reason for moving so far away from the world I knew so well was to find “me”. Escape the cold environment of the corporate world and seek a new lifestyle that incorporated “giving back” and helping people where I can.
Although I had never heard of Scleroderma before moving here, after meeting several people who have been diagnosed with scleroderma and learning what they deal with on a
daily basis, I wanted to do something to benefit them and all effected people.
Whilst I am not a sufferer myself, such a debilitating disease needs to be known about amongst those of us who know nothing.
I felt I could offer my assistance to the QLD Committee by taking on the responsibilities of IT, sharing and using my knowledge and expertise to get the details of this autoimmune disease “out there” and known about, as much as possible and I am convinced my IT skills can assist in that challenge.
I am excited to be involved with the Scleroderma QLD Committee Members and of course the whole membership, whilst working to help the Association move forward in a positive way.
My interests include exercise, gardening and everything “doggy”, having 3 chocolate Labradors of my own. Most would say I am a crazy dog-lady and yes, there is definitely a lot of that in me too!!
I am looking forward to seeing greater awareness and knowledge of this disease within the general public, in the hope this will lead to more sponsorship, treatment outcomes and research for all you wonderful people.
Please feel free to reach out to me anytime through the Qld Scleroderma Support Group on Facebook.
My reason for moving so far away from the world I knew so well was to find “me”. Escape the cold environment of the corporate world and seek a new lifestyle that incorporated “giving back” and helping people where I can.
Although I had never heard of Scleroderma before moving here, after meeting several people who have been diagnosed with scleroderma and learning what they deal with on a
daily basis, I wanted to do something to benefit them and all effected people.
Whilst I am not a sufferer myself, such a debilitating disease needs to be known about amongst those of us who know nothing.
I felt I could offer my assistance to the QLD Committee by taking on the responsibilities of IT, sharing and using my knowledge and expertise to get the details of this autoimmune disease “out there” and known about, as much as possible and I am convinced my IT skills can assist in that challenge.
I am excited to be involved with the Scleroderma QLD Committee Members and of course the whole membership, whilst working to help the Association move forward in a positive way.
My interests include exercise, gardening and everything “doggy”, having 3 chocolate Labradors of my own. Most would say I am a crazy dog-lady and yes, there is definitely a lot of that in me too!!
I am looking forward to seeing greater awareness and knowledge of this disease within the general public, in the hope this will lead to more sponsorship, treatment outcomes and research for all you wonderful people.
Please feel free to reach out to me anytime through the Qld Scleroderma Support Group on Facebook.
Suzanne Brown - Treasurer
Bio to come...
Kate Legg - IT Officer
Hi. My name’s Kate. I was born in New Zealand where I lived for 3 years before moving to Australia.
I was born with Albinism, a genetic condition which means you have no pigment in the skin. This left me highly sensitive to sun burn and almost anything that you put on my skin. It also meant I was
legally blind from birth.
My mother was determined that I would attend “normal” school and obtain any help I needed there. I attended mainstream schooling up until grade 8 where I transferred to a private performing arts school. You see I had been moving my feet since the age of two so mum put me in dance class and I of course wanted to be a ballerina. I quickly learnt that world was extremely “bitchy” and after my friend became seriously ill from an eating disorder, I decided that that life wasn't for me. I changed to ballroom dancing, something I enjoyed right up until I became ill.
I went to university in Sydney, studying a Business degree and afterwards worked for the Commonwealth Bank in their training department. In 2001 I transferred to a Glasgow (Scotland) operation of the Bank, which then saw me move from the corporate world and retrain as a high school teacher in the area of IT.
I absolutely loved teaching and also living in the UK, especially the opportunity it gave me to travel. I traveled all over Europe in the nine years I lived in the UK. I returned to Australia, the Sunshine Coast, QLD, after the death of my mother in 2010. I looked after my father and continued to teach and travel as much as I could. I found the coast a hard place to make my home at first but now have to say it’s the best place ever.
In 2013 I become ill after an Appendix operation. After a year and a half of a whirlwind of doctors visits and multiple tests I was diagnosed with Scleroderma. What a world changer!! My hands were completely contracted at this point, I was told they could have saved my hands had I seen them earlier... I would have punched someone if I was physically able to! LOL.
Anyway, my journey since diagnosis has been long and hard, filled with lots of highs and amazing
people. Currently I am still living on the Sunshine Coast and unfortunately my Dad died in 2022 so its
just me and my two dogs Sophie and Charlie. At this point, I can no longer walk due to knee
contractures and have regular fainting spells and nerve seizure events. I also had to retire from my
teaching job which came with its own challenges. Despite all this I have had some amazing opportunities to see the world, including traveling to Hawaii, Russia and Alaska. I also recently tried out the IFly in Brisbane, what fun and it turns out that stiffness actually comes in handy, who knew???
At the moment I am really enjoying getting into my role with Scleroderma Queensland as their IT Officer. It has really given me a chance to give back and also focus on something bigger than me which I have found to be very liberating.
That’s me in a nutshell, hopefully I might get to hear some of your story’s soon.
Thanks for reading.
Kate
I was born with Albinism, a genetic condition which means you have no pigment in the skin. This left me highly sensitive to sun burn and almost anything that you put on my skin. It also meant I was
legally blind from birth.
My mother was determined that I would attend “normal” school and obtain any help I needed there. I attended mainstream schooling up until grade 8 where I transferred to a private performing arts school. You see I had been moving my feet since the age of two so mum put me in dance class and I of course wanted to be a ballerina. I quickly learnt that world was extremely “bitchy” and after my friend became seriously ill from an eating disorder, I decided that that life wasn't for me. I changed to ballroom dancing, something I enjoyed right up until I became ill.
I went to university in Sydney, studying a Business degree and afterwards worked for the Commonwealth Bank in their training department. In 2001 I transferred to a Glasgow (Scotland) operation of the Bank, which then saw me move from the corporate world and retrain as a high school teacher in the area of IT.
I absolutely loved teaching and also living in the UK, especially the opportunity it gave me to travel. I traveled all over Europe in the nine years I lived in the UK. I returned to Australia, the Sunshine Coast, QLD, after the death of my mother in 2010. I looked after my father and continued to teach and travel as much as I could. I found the coast a hard place to make my home at first but now have to say it’s the best place ever.
In 2013 I become ill after an Appendix operation. After a year and a half of a whirlwind of doctors visits and multiple tests I was diagnosed with Scleroderma. What a world changer!! My hands were completely contracted at this point, I was told they could have saved my hands had I seen them earlier... I would have punched someone if I was physically able to! LOL.
Anyway, my journey since diagnosis has been long and hard, filled with lots of highs and amazing
people. Currently I am still living on the Sunshine Coast and unfortunately my Dad died in 2022 so its
just me and my two dogs Sophie and Charlie. At this point, I can no longer walk due to knee
contractures and have regular fainting spells and nerve seizure events. I also had to retire from my
teaching job which came with its own challenges. Despite all this I have had some amazing opportunities to see the world, including traveling to Hawaii, Russia and Alaska. I also recently tried out the IFly in Brisbane, what fun and it turns out that stiffness actually comes in handy, who knew???
At the moment I am really enjoying getting into my role with Scleroderma Queensland as their IT Officer. It has really given me a chance to give back and also focus on something bigger than me which I have found to be very liberating.
That’s me in a nutshell, hopefully I might get to hear some of your story’s soon.
Thanks for reading.
Kate
Deb Lynch
Bio to come...
Elaine Haggerty
My name is Elaine, and I was born in Whyalla SA but I was raised in Toronto, Canada until I was 20 years old and came back to Australia to seek a different lifestyle.
I have always been passionate about exploring the world and learning new things. My journey led me to pursue a degree in Business Management but in the meantime I had many different careers from working in a photo laboratory, being a Meter Reader for the Gas Company AGL, and then finally, I took on my final corporate role for 13 years with IBM Australia, where I had numerous roles and ended as a Sales Manager and Team Leader.
Throughout my life I developed a keen interest in all things IT and ended my corporate career to move to Queensland with my wonderful partner and our dogs to create a less stressful lifestyle to live out our working career. Over the years, I have held various positions aimed at helping people and enjoying the pleasures my new roles provided. I now work as a support worker helping an autistic young woman live her best life.
In my free time, I enjoy reading, music and cooking and I am always seeking new adventures and experiences. My goal is to make a positive impact on the world and inspire others to do the same. My partner worked with a few clients who have Scleroderma which also motivated me to assist with what I could, to help with this life-changing disease. I have committed to being in the Scleroderma committee and enjoy helping and assisting in any way possible.
I look forward to meeting as many of you as possible!
I have always been passionate about exploring the world and learning new things. My journey led me to pursue a degree in Business Management but in the meantime I had many different careers from working in a photo laboratory, being a Meter Reader for the Gas Company AGL, and then finally, I took on my final corporate role for 13 years with IBM Australia, where I had numerous roles and ended as a Sales Manager and Team Leader.
Throughout my life I developed a keen interest in all things IT and ended my corporate career to move to Queensland with my wonderful partner and our dogs to create a less stressful lifestyle to live out our working career. Over the years, I have held various positions aimed at helping people and enjoying the pleasures my new roles provided. I now work as a support worker helping an autistic young woman live her best life.
In my free time, I enjoy reading, music and cooking and I am always seeking new adventures and experiences. My goal is to make a positive impact on the world and inspire others to do the same. My partner worked with a few clients who have Scleroderma which also motivated me to assist with what I could, to help with this life-changing disease. I have committed to being in the Scleroderma committee and enjoy helping and assisting in any way possible.
I look forward to meeting as many of you as possible!