Shae’s Story
09 March 2021
Hi, my name is Shae. I am 18 years old and have NF1. I was born in Australia but I now live in the UK. I never really spoke about my condition or really looked into it until I was in year 11 at high school. I think I must have been two when I was first diagnosed with NF1. My mum spotted some café au lait spots on my body and took me for a check-up. When I was three, I remember being taken to have a biopsy done on my back where my tumour is. Ever since then I have had yearly check-ups at the hospital.
Growing up I was fortunate as my NF didn’t affect me that much. I have ginger hair so the kids at school would always say something about my hair more than my back. As time went on though, I did get more questions about my back and eventually, I started to become more insecure about it, but now I am learning to love it.
In 2012, my tumour had grown quite a bit, causing my skin to bulge. On the 21st of December, I had part of it removed to make my back flatter. Not long after, I was told that all my stitches were out. As I was living in Australia at the time, this was great news! It was always scorching hot, and we got a swimming pool for Christmas, which was a blessing. Unfortunately, I didn’t realise that there was actually one stitch left in, which ended up getting infected, leaving me with a red patch around my scar to this day.
In 2015, I moved to the UK. There are many specialist NF clinics here, so it was a good thing we moved. I have found out a lot more about my condition since then. I now know that my tumours aren’t in fact a big lump but are actually intertwined with my nerves. The tumour on my back has now grown to be 15x20cm big and 8mm thick, which is pretty big, I know!
Although I learnt more about my tumours, I didn’t find out that NF can cause learning difficulties until Year 11. Now I understand that my NF is the reason that I have glasses and have trouble with learning, understanding time and my memory, amongst other things. Fortunately, I found out about my learning difficulties before I sat my GCSE exams. My teachers had predicted me to fail everything, but since I received extra time and support, I managed to pass 4 exams. I eventually passed English as well after resitting, so I passed 5 out of 7 exams, which I was very proud of!
One positive thing I learnt about my NF is that it has made my problem-solving skills much better than the average person, which I guess is a perk. However, I do find it harder to understand people fully, which can cause me to lose friends – this is definitely not a perk. Even though I know there are other people out there with NF, I have never met anyone else with the condition.
NF1 hasn’t stopped me living my life. I have played basketball for 6 years now, progressing from playing in my local league to playing in the Division 2 national league.

I have also gone on to further education, now in my second year of studying basketball and sporting excellence at college. One day I hope to go onto University to study physiotherapy.
Since I have recently turned 18, I have more options with regards to my NF treatment. I can, if I want to, talk to my surgeon about removing the tumour from my back, although I am not too sure about this as there are lots of pros and cons to this and it would be a complicated procedure.
Filter News
_5_800_600_s_c1.jpg)
Safiya’s NF1 Journey
Find out more about Safiya & how her NF1 diagnosis has made her 'determined to make a difference'.
Read More_1_800_600_s_c1.png)
The Boy Who Played Cricket
Take a look behind the scenes of team NTUK's visit to the 'The Boy Who Played Cricket' opening.
Read More_800_600_s_c1.jpg)
Ella’s Story
Ella shares her insights into campus life with NF; her victories & hurdles & the importance of self- belief.
Read More_800_600_s_c1.png)
Amit Ghose: The Unscripted Podcast
Caught the brand new pod by NTUK Ambassador Amit Ghose? Everything you need to know about The Unscripted Podcast inside.
Read More
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma.
Read More_2_800_600_s_c1.jpg)
3BM & Fusion’s Purple Forum nominate Nerve Tumours UK as their Charity of the Year
Take a look inside Purple Forum and how they're raising awareness and funds for the NF community.
Read More_2_800_600_s_c1.jpg)
George, Alisya’s & Leo’s NF1 Story
Find out how George and his team at Rolls Royce are raising NF awareness because of NF hero Leo.
Read More_800_600_s_c1.jpg)
World NF Awareness Month 2025: In Review
A look back at some of the highlights of World NF Awareness Month, May 2025.
Read More