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
Crazy Nanna Hazel & Evie
4 year old Evie's NF1 diagnosis impacted the whole family. Hazel shares Evie's story from a grandmother's perspective
Read More2024 Friedrich von Recklinghausen Award
Professor Rosalie Ferner, Trustee and Member of the Nerve Tumours UK Medical Advisory Board receives this year's award
Read MoreBecome a Trustee
Nerve Tumours UK are looking for at least two new trustees to join the Board. Find out more
Read MoreGuy’s Hospital NF Centre Coffee Meetings
Guy's Hospital Neurofibromatosis Centre Coffee Club 2024
Read MoreLiz’s NF1 story: This is the real me
Liz describes growing up with NF1, difficulties at school, spinal surgery and raising awareness by writing a poem about NF.
Read MoreStronger Together Rare Conference
Read this review of the conference and find out where to access further support
Read MoreGisela’s NF2 story
Gisela has NF2 & has a positive outlook on life, she has just completed a 265km walk during World NF Awareness Month
Read MoreOxford’s John Radcliffe Hospital celebrate NF2 Awareness Day
We set out to promote and educate people about NF2 & the service offered in Oxford & Southwest Region for patients
Read More