Scleroderma Australia Committee – Deputy Chair

Scleroderma Australia are delighted to have Tara Haneveld as one of our Scleroderma Queensland representatives join our committee to further promote, support, and foster understanding and research into this challenging and largely unknown condition.

At the age of 40, Tara was diagnosed with Systemic scleroderma with the first symptoms presenting as pain in her feet and stiffening of her hands. This came on as she was recovering from viral encephalitis, which had left her with relatively mild but still challenging cognitive impairment. Her treating team at the time were rightly focussed on her acquired brain injury, however as this was improving with psychological treatment, her feet and hands were just getting worse. Tara was formally diagnosed 3 months later and was referred to the expert team at St Vincent’s hospital Melbourne, where she received the best of care.

Prior to Tara’s diagnosis of Scleroderma, she started her 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 and providing you with the courage and energy to keep fighting. Tara also played Clarinet and Saxophone professionally on the jazz and musical theatre scene and was a Martial Arts Instructor.

As Tara got older, she wanted to find secure employment and decided to train as a Registered Nurse, undertaking her 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 clinicians to foster what truly mattered, and it proved to be the most joyful place she ever worked.

Through-out her nursing career, Tara was fortunate to work in many other areas of nursing including rural and regional settings. She completed her Nurse Practitioner Internship in 2010. This was when she became unwell with Scleroderma, and had to reinvent herself yet again. Tara’s poor hand function meant that she could no longer perform the duties as a nurse. In developing numerous ulcerations along both arms and being unable to stand for longer than 10 minutes meant it was unsafe for Tara to be within the clinical environment.

Tara’s new career was in the important stream of Education, firstly with the Department of Health in Victoria and then Federation University, where she 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 Tara could no longer continue working due to Scleroderma and the complications that ensued, so as a family they made the big decision to uproot their world and move to warmer climate. Her son was in year 10 so timing was right to 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?”

It was in December 2019 when they arrived in Maleny, Queensland with her mother, husband and son. In the space of 6 months, they had sold two properties in country Victoria, driven through bushfires and bought a home where they could live together as a family.

After three years of COVID, Tara has settled into her new life with the support of her mother, husband and a small group of friends. Her determination and knowledge have assisted her in gaining access to the disability pension and the NDIS. Tara can rejoice in the good fortune that she has had despite her diagnosis, with the love of a family and financial security which has allowed her to better negotiate the challenges that Scleroderma poses every day.

Tara is very excited about the next stage of her journey, and to be working with the scleroderma committee and community, as her Dad used to say, “As we travel the broad highway together”. 🌻