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
Union Chapel Stand Up for Nerve Tumours UK Comedy Fundraiser
Check out the photos from World NF Day's Comedy Fundraiser at London's Union Chapel
Read MoreWorking Together: from a tentative diagnosis and beyond
Emily Owen & her mother Anthea, recount their memories of Emily's NF2 diagnosis
Read MoreTate’s Shine A Light Marathons
Support Tate with his 2023 Shine A Light 100 mile Challenge
Read MoreBeth’s NF1 story
"I had no idea what NF was until I got diagnosed with it." Beth shares her NF1 journey to help raise awareness
Read MoreShine A Light 2023
The Shine A Light 2023 campaign had 162 buildings around the UK & the Republic of Ireland lit up in blue!
Read MoreChristine’s Coronation fundraising
Christine has been fundraising for NTUK for 10 years, since her grandson was diagnosed with NF1.
Read MoreMegan’s NF1 story
Megan has NF1 & other complications: "I will always live my life to the fullest and not let my diagnosis stand in my way"
Read MoreShine a Light May 2023
Shine A Light Activities during World NF Month May 2023 - Get Involved!
Read More