Dialog Box

Children's Tumour Foundation of Australia

Emmily's Story

I was diagnosed with NF1 at the age of five after my parents noticed numerous cafe-au-lait spots on my body. It was due to a spontaneous genetic mutation, which means I was the first (and so far only) person in my family to have this condition.

Growing up my parents did their best to make me feel as normal as possible, and in my younger years, I never noticed my differences. I was very blessed that appointments would only be twice a year to see an Ophthalmologist and a Neurologist, with an occasional MRI to make sure the neurofibromas on my spine were not developing (to this day they have not!)

The first time I noticed I was different was at the age of 11, I was in a dance class in my leotard and the teacher was pacing the room as we were standing there. She stopped and stared at me puzzled and pointed to my shoulder saying how odd it looked. She was pointing at one of the more noticeable neurofibromas.

In this moment the room fell silent, and I felt like all eyes were on me. I had no words and felt extremely self-conscious.

Now looking back on situations like this, I realise they never said it to be mean, it came from a place of curiosity as people don’t know much about NF. As a young person I continued to shy away from talking about my condition.  If anyone brought it up, I would shut down the conversation.

For me, these questions of curiosity began a terrible cycle of comparison and even the most insignificant of ‘lumps’ and ‘spots’ carried so much weight and sadness for me.

At the age of 16, I had my first surgery to remove one of my large plexiform neurofibromas in hopes of creating some normality. Unfortunately, I still couldn’t shake the feeling that comparisons were still being drawn.

It fuelled my struggle with low self-esteem and caused my body dysmorphia to progress. 

This was difficult to overcome as I didn’t know who to turn to, or even how to talk about what was happening. 

I assumed people wouldn’t understand what was happening. I was in a constant battle with myself. I was convinced that if I didn’t talk about it, covered up or changed something about myself like my hair, weight or clothes, that I would love myself more. 

It wasn’t until I finally realised that my looks were the least interesting thing about me that I began to let go of these insecurities.

I have since had two operations, the latest was at the beginning of 2021.

The difference that 10 years can make to a person’s perspective is significant. I am now focussed on how this can be of benefit to my health than how it will help me to fit into society’s perception of beauty.

Perhaps my studies and work as a registered nurse has helped me to see how important our health is.

I have felt empowered by sharing my story and letting people in. 

If only my 16-year-old self had understood that by opening up and bring NF out of the shadows, support would have followed. 

Now in my mid-twenties, I finally feel at peace with my NF. 

I still have my days when I don’t feel great about myself, but they don’t stop me from living my life.

What has helped me through the most difficult of times is my faith. I recognise that I was made in the image of God and that he has a plan and purpose for me; something that is so much bigger than just the way I look.

Holding onto these promises has eased my anxiety on how I look and what my future will be like.