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.

Neurofibromatosis 1 in the 21st Century

Professor Rosalie Ferner delivers key speech “Neurofibromatosis 1 in the 21st Century” to the BPNA 2022 Annual Conference

The International Rare Disease Showcase 1st – 3rd February 2022

The International Showcase is a unique & important event, with interactive sessions taking place from 1st-3rd February 2022