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
Avastin Side Effects
Jo has collated shared personal experiences, with medical and general advice on Bevacizumab (brand name Avastin)
Read MoreDavid’s Story - Community and Acceptance
David contacted NTUK after seeing our advertising campaign at King's Cross Station in London last year. Read his story:
Read MoreMeet Clare
Clare is a Specialist NF Nurse based at Ryegate Children's Centre at Sheffield Hospital, covering the South Yorkshire region
Read MoreTracey, Specialist NF Nurse
Meet Tracey. She is based in Southampton & covers Hampshire, Dorset, West Sussex (part), Wiltshire and the Isle of Wight.
Read MoreMeet Carolyn
Specialist NF Advisor Carolyn is based in Birmingham and covers the West Midlands, Shropshire and Staffordshire.
Read MoreToday is Giving Tuesday
Call out by Karen Cockburn, Charity Director, to donate and support the NF Community
Read MoreRunderpants fun run
Get your Runderpants here! Set up a fun run wearing some special fundraising pants
Read MoreMeet Sarah, our new Specialist NF Nurse
Sarah will be based in Leeds, supporting families across Yorkshire and Humberside
Read More