Diagnosed with Turner Syndrome (TS) at just 12, Dianne King has spent a lifetime proving that a diagnosis doesn’t define you — community does. Now 65, the disability support worker and advocate is looking back on the friendships, self-belief, and unexpected opportunities that shaped the confident woman she is today.
I still remember the long days at the Royal Children’s Hospital. Sitting in waiting rooms, seeing specialist after specialist. It was a lot to take in at that age, but I didn’t let it define me.
High school was a smooth ride. My short stature felt normal to me. I didn’t see myself as different and thankfully, my friends didn’t either.
TS wasn’t something I talked about much. It was just part of who I was.
The real turning point came years later, in 1984.
I’d moved to Wodonga, and I was in the local bank when a woman looked at me and said, “You have TS, don’t you?” I was stunned.
No one had ever recognised it in me before. That moment sparked something in me. I felt seen.
We grabbed a coffee that turned into hours of talking, and a lifelong friendship. She later stood beside me as one of my bridesmaids at my wedding.
Like me, she’s had her ups and downs over the years. I’d often remind her we have Turner Syndrome for life, but it’s not our life.
That encounter lit a fire in me. If connection could change my life, maybe I could help others find their people too.
I started small, leaving TS information at local doctors’ clinics. I didn’t expect much, but soon I was connecting with women who were looking for support, just like I once was.
That’s when I formed a Turner Syndrome support group in Wodonga. We met regularly and the sense of belonging was immediate. For the first time, I was surrounded by people who understood me without needing an explanation.
I also joined the Australian Turner Syndrome Association and eventually became secretary for three years. As I connected with more women, I saw a need for ongoing support.
I created a Facebook page called ‘Australian Turner Syndrome Friends’. It became a space where people could ask questions, share stories, and feel seen.
Soon, members began asking for in-person catch-ups, and we started organising regular events in Melbourne twice a year.
These gatherings have become a cherished tradition. We talk openly, share our journeys, and support one another.
Partners often come along too. My husband has been wonderfully supportive and enjoys meeting everyone. It’s a great opportunity for everyone to connect and share their experiences.
I saw a need and created a space where people could connect and feel seen.
Dianne on founding Australian Turner Syndrome Friends on Facebook.
Over the years, I’ve faced some health challenges.
About 15–20 years ago, I developed fatty liver disease, and not long after, a dissection of the aorta—one of the more serious health issues associated with TS.
I also have a hearing disability and started using hearing aids over 15 years ago.
Despite these challenges, I feel lucky. I haven’t experienced many of the other complications that can come with TS.
I’ve also learned that not all disabilities are visible. That understanding has shaped my work.
Five years ago, I changed careers and became a Disability Support Worker in the Albury/Wodonga region.
It’s been an amazing journey of growth. I love helping people develop new life skills and independence—things that are often taken for granted.
My advocacy work expanded beyond TS. I became a member of the Wodonga Accessibility Group and connected with local disability services.
That work was incredibly fulfilling and led me to join the V/Line State Accessibility Reference Group 10 years ago.
Just recently, I accepted a mentoring role with V/Line, starting in November. I’ll be sharing my experiences and helping others navigate their own journeys in accessibility and inclusion.
Don’t go it alone. There is always someone out there somewhere who understands, and wants to support you.
Dianne’s message to newly diagnosed women.
None of this would have been possible without the support of my husband, who was my high school sweetheart.
His love and encouragement have helped me grow into the person I am today.
To any young girl or woman newly diagnosed with Turner Syndrome, I want you to know—don’t give up, and don’t go it alone.
It’s important to know there is always someone out there somewhere who understands and wants to support you.
Reach out. Stay positive. You are not defined by TS. You are so much more.
All reasonable steps have been taken to ensure the information created by Jean Hailes Foundation, and published on this website is accurate as at the time of its creation.
© 2025 Jean Hailes Foundation. All rights reserved. This publication may not be reproduced in whole or in part by any means without written permission of the copyright owner. Contact: licensing@jeanhailes.org.au
