Cassie - Always on my mind
Researchers from Edith Cowan University (ECU) are hoping to shed some light on the Hidden World of Huntington's disease (HD) through an exhibition at the Spectrum Project Space within the newly built ECU City Campus.
The exhibition, a collaboration between ECU's Centre for Precision Health, School of Arts and Humanities and School of Education, uses the creative methodology of photovoice to empower participants to share their lived experience of HD through photos and words, revealing deeply personal perspectives that are often unseen, unheard or misunderstood.
"The general public has very little understanding of HD, or what they do know might be viewed through a medical lens. Through this exhibition, we are hoping to give voice to the personal experiences of people living with this condition," said ECU PhD student Ms Cassandra Caratti, who has lived experience of HD.
"In addition to raising awareness of HD, we want to create an understanding of the human experience, which will hopefully create dialogue and help to reduce stigma."
The exhibition, which will run between 23 and 27 March, will feature more than 120 contributions from people with lived experience, family members, health professionals, and researchers.
"Each story provides a unique window into the challenges, strengths and hidden realities of living with HD," said ECU senior researcher and co-lead Dr Travis Cruickshank.
Visitors to the exhibition will be encouraged to share their thoughts of the exhibition as part of a broader research project examining the impact of the initiative. The exhibition will be evaluated to better understand how it influences awareness and public understanding of Huntington's disease, with insights gathered contributing to future publications and informing ongoing research in this area.
"By revealing the hidden world of HD, this project is not only creating space for perspectives that are too often overlooked but also laying the foundation for better care, stronger community understanding and deeper global collaboration. It is also positioning the research team and supporting partners Huntington's Australia and the Centre for Precision Health, along with collaborators, as innovators in using art as a tool to uncover hidden insights that will drive better understanding across the wider community," Dr Cruickshank said.
