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.

Kate’s NF1 Story & DanceAthon

Kate describes her son's NF1 journey and how NTUK supported them

World Mental Health Day

Your mental health is as important as your physical health

Strictly Come Running: London Marathon Class of 2021

Congratulations to our class of 2021 London Marathon runners

Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2021 NHS England NF2 meeting

Read more about the England NF2 meeting - working together to improve the experience of NF2 patients

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

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

Student Voice Prize 2021

The 2021 Student Voice Prize opens on 6th October! #DareToThinkRare for the 8th annual essay competition!

Centre for Appearance Research - Parent Support Materials Study

The Centre for Appearance Research is doing a study on parent support materials - can you help?

Centre for Appearance Research - YP Face IT

YP Face IT offers online support for young people with conditions or injuries affecting their appearance

Grace’s NF1 story - Nothing stops me

My name is Grace, I am 18 years old. I was diagnosed with Neurofibromatosis Type 1 when I was 2 years old.

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.