Grace’s NF1 story - Nothing stops me
10 January 2022
My name is Grace, I am 18 years old. I was diagnosed with Neurofibromatosis Type 1 when I was 2 years old.
For me it has resulted in a few complications, such as an optic nerve glioma, scoliosis of the spine, café au lait marks and neurofibromas.
I had 18 months of chemotherapy to shrink the tumour behind my left eye, which unfortunately left me blind on that side. I’ve been in and out of hospital a lot over the years, with many MRI scans and appointments, but I’ve never let this stop me from doing anything.
Growing up, I was always active and had a love for swimming and triathlon. Due to my visual impairment, I was able to compete in the para category in my local triathlon club events and swimming galas.
![](/images/common/Grace_Picture3_1024x768.jpg)
My biggest accomplishment within sport was when I competed in the British Blind Sport National swimming championships in Birmingham, collecting a series of gold and silver medals over the years.
![](/images/common/Grace_Picture1_1024x768.jpg)
I am currently in my first year at university studying Health and Social which I hope will lead me into a career in which I can care for people, as I know personally how important the health and social care sector is and what a difference it can make.
Filter News
![](https://nervetumours.org.uk/images/made/images/common/Tom_Moran_wedding_day_370x280_800_600_s_c1.png)
Thomas’ NF1 story
Thomas describes growing up with NF1, supporting Liverpool FC and taking on challenges with support from his wife
Read More![](https://nervetumours.org.uk/images/made/images/common/Untitled_design_(41)_800_600_s_c1.png)
Meet Jessica, new Specialist NF Nurse
Jessica will work with Specialist NF Nurse Helen Tomkins, supporting families across Devon and Cornwall.
Read More![](https://nervetumours.org.uk/images/made/images/common/fb_eventcover1200_628_-26540595-e1708475536938_800_600_s_c1.png)
Rare Disease Day 2024
Read our update on the events and meetings NTUK attended to help raise awareness of NF
Read More![](https://nervetumours.org.uk/images/made/images/common/77529945_1705140784649954_r__1200x900_with_RDD_logo_1_800_600_s_c1.jpg)
Johnathan’s story
Johnathon's family are spreading awareness of the importance of attending health checks and advocating for vulnerable people
Read More![](https://nervetumours.org.uk/images/made/images/common/image2_(3)_370x280_800_600_s_c1.jpg)
Jen’s NF1 story
Jen praises the great support received since her NF1 diagnosis, allowing her to thrive & achieve a 1st class degree.
Read More![](https://nervetumours.org.uk/images/made/images/common/Untitled_design_(2)_800_600_s_c1.png)
Charlotte & Evie’s story
'Sticker Queen' Evie is 4 years old and was diagnosed with NF1 after tests for a 'lazy eye'.
Read More![](https://nervetumours.org.uk/images/made/images/common/Untitled_design_(5)_800_600_s_c1.png)
Luke’s Story
Luke had NF1 since childhood. Now an adult, surgery last year has enabled him to play football and do whatever he wants
Read More![](https://nervetumours.org.uk/images/made/images/common/Untitled_design_(1)_800_600_s_c1.png)
Charlotte’s Story
When Charlotte was 6, she was diagnosed with NF1, along with her brother & dad. Now she is on a mission to raise awareness
Read More![](https://nervetumours.org.uk/images/made/images/common/cover_image_with_Manchester_Uni_logo_370x280_800_600_s_c1.jpg)
Eden P for healthcare professionals
Healthcare professionals, who provide support to expectant parents with NF1 are invited to take part in the Eden P study
Read More