Step Into the Hidden World of Huntington’s disease
You’re invited to take part in a powerful and creative project that gives voice to the lived experience of Huntington’s disease—through photography.
Sample photos for the Photovoice project
The Hidden World of Huntington’s is a Photovoice project led by Dr Travis Cruickshank, Ms Melanie Clark, and Mrs Cassandra Barnes from Edith Cowan University. It’s an opportunity to tell your story, not with long explanations or complicated words, but with the simplicity of a photo and a few self-reflections.
What is Photovoice?
Photovoice is a way for people to share their perspectives by pairing images with personal reflections. It’s about using the camera as a tool to express what life with HD looks and feels like—capturing the moments that are often unseen by the wider world.
What is the project about?
You’re invited to take part in a study where you’ll use photos to share your experience of living with Huntington’s disease (HD). Each week, you’ll receive themes and prompts to guide you as you capture moments from daily life. Alongside each image, you’ll share a short explanation of what it means to you.
The aim is to raise awareness of HD and help others understand its real-life impact. Researchers will look for shared themes in participants’ photos and comments to better understand the hidden, lived experiences of people affected by HD. This is Phase 2 of a larger project using Photovoice as a creative way for the HD community to show what often remains unseen.
Why take part?
Your photo, whether joyful, challenging, or deeply personal, can help:
- Raise awareness and educate the broader community
- Deepen understanding of life with HD
- Build support for individuals and families
- Strengthen advocacy, research, and policy efforts
How to join
What does participation look like?
Here’s an example from Mrs Barnes, one of the researchers behind the Hidden World of Huntington’s project:
Title: HD FREE
What does this image mean to you?
Thanks to the science of IVF/ PGT, financial support from my parents-in-law, and emotional support from my husband and family, I was able to make sure my son was born HD-free. I am so grateful.
What is the context?
The financial, emotional, time and physical costs – and all the drugs, procedures and needles – were all worth it
What do you want people to know?
I thought it would be simple because I wasn’t doing IVF for fertility. It wasn’t! It was probably the hardest thing I’ve ever done.
Got questions?
If you’d like more information—or just want to chat about the project—reach out to the team at hdphotovoice@gmail.com or call 0466 607 006. You don’t have to be part of the research to follow along and learn.
Your story, your choice. All images will remain confidential unless you give permission to share them. No personal details will be published.
This is your chance to let people see what often goes unseen. Your photo might speak louder than words ever could.
