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
Everybody is born a Champion
NTUK & RBH's 3rd campaign features GB Paralympian Thomas Young, who has NF1, and celebrates those living with NF
Read MoreMario Antona’s NF2 Story
In memory of his dad, who passed away from NF2, Mario cycled 500 km across the Pyrenees to raise funds for Nerve Tumours UK.
Read MoreEva-Hope’s NF2 story
Tahlia describes how the family felt after receiving daughter Eva-Hope's NF2 diagnosis
Read MoreMy Neuro Survey 2024
Fill out #MyNeuroSurvey and help to improve treatment, care and support for everyone affected by neurological conditions.
Read MoreVTCT Foundation Showcase
Find out about this event which showcases projects and research supported by the VTCT Foundation
Read MoreCrazy 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 More