Dialog Box

Children's Tumour Foundation of Australia

Heather's Story

My name is Heather and I was diagnosed with Neurofibromatosis Type 1 when I was born. I inherited it from my mother as it ran in her family.

Growing up with NF was hard. Kids can be really mean when someone “looks different”. I was bullied frequently for my appearance, bumps, weight, and scoliosis. My scoliosis was quite severe. At 12 years old I had corrective surgery to straighten my spine, but even after the procedure, there was no end to the bullying. I struggled more with my weight and felt extremely insecure about my condition.

I struggled with depression and anxiety, eating disorders and body dysmorphia. I hated who I was for so long. I was ashamed and embarrassed. It took many years of working on loving myself to let all those negative thoughts go.

I found my confidence in the gym. I began to fall in love with fitness and nutrition, which has led me to become a personal trainer. Nothing made me happier than helping women and men gain confidence with their bodies regardless of their weight or imperfections.

I started my fitness Instagram page @heathers_fitlife to create a platform where I could talk freely about NF and my journey to fall in love with myself and my body - flaws and all.

The one thing that keeps me posting is the countless messages from people all over the world thanking me for showing my tumours and not hiding away. It has given them confidence and hope and hearing them say that reassures me that what I’m doing is having a positive impact.

I think when I truly found happiness was when I moved to Australia from Vancouver, Canada in 2018. My mum came to visit and she looked at me and said “I have never seen you this happy and confident in your life, this is where you are meant to be”. That really stuck with me. I have re-invented myself since moving here and I couldn’t be happier.

I no longer see having NF as a bad thing. It’s made me who I am today, and it can’t be changed so I have accepted it fully with open arms. My hope is that everyone who is also living with this condition can do the same.

Your body is uniquely yours - love it regardless of the flaws, scars, lumps, bumps, and all. NO-BODY is perfect and once you start realising that, you become unstoppable.

It is important to bring NF out of the shadows because more people need to be educated on what NF is and what the challenges of living with NF are for people like myself. I want to shine a light on the importance of acceptance and learning to overcome the challenges faced with having NF. Not letting it slow you down in life or stop you from living the life you want to live!