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

Love Yourself - Hour of Power in Support of the NF community
Get your sweat on and spread the love this Valentine's day for our NF community!
Read More
Pat’s NF Fundraiser Walk
Read all about Patrick's incredible fundraising efforts to help others affected by NF!
Read More
Laura’s Marathon effort!
Laura beats our 26.5 mile challenge and takes it to the next level - matching miles with donations, find out what she's up to
Read More
Research call: Does neurofibromatosis affect how you feel about your body?
Find out how you can improve self-help methods for people living with neurofibromatosis
Read More
Stitched up by Celia
Get inspired by Celia's creative online haberdashery shop for Nerve Tumours UK!
Read More
NF1 with Plexiform Neurofibromas Study: information for patients and carers
Find out how you can help shape the future of NF1 healthcare
Read More
Changing Faces Impact of Covid Survey
Share your experience of covid19 with Changing Faces and help shape the support you need
Read More
Be as creative as Faye – Follow her social distance fundraising example!
Be inspired by Faye & take on your own creative fundraising idea this lockdown!
Read More
Become an NF Patient Representative
Help fight to cure all types of NF by taking part in the latest clinical trials, find out how you can get involved.
Read More