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.

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.

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

Douglas Thomson’s NF1 Story
Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him
Read More
Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith
Tricia's fundraising wingwalk in memory of her daughter Sarah who had NF1, and to remember her father Keith
Read More
Student Voice Prize 2021
The 2021 Student Voice Prize opens on 6th October! #DareToThinkRare for the 8th annual essay competition!
Read More
Centre for Appearance Research - Parent Support Materials Study
The Centre for Appearance Research is doing a study on parent support materials - can you help?
Read More
Centre for Appearance Research - YP Face IT
YP Face IT offers online support for young people with conditions or injuries affecting their appearance
Read More
Counselling support from Changing Faces
Changing Faces - Counselling support: confidential one to one support sessions for people with a visible difference
Read More
Nerve Tumours UK Community Survey
This consultation provided direct feedback to the strategy group, to look at how we can continue to provide our services
Read More
Suzi’s NF2 story
Suzi used her own NF2 diagnosis to inspire her research into how identity is experienced by people with NF2
Read More
Emma’s Story
Emma shares her journey with NF after finding out her daughter, Poppy, has been diagnosed with NF Type 1.
Read More