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
Shine A Light on Neurofibromatosis now streaming on The Disorder Channel
Find out how we are bringing NF Awareness to people's homes
Read MoreBest Film Nomination “Shine A Light on Neurofibromatosis” PM Society Digital Awards
Join the awards ceremony virtually this Wednesday 16th September
Read MoreAct it Out Prototype App Trial
If you are experiencing difficulties related to NF & 'Visible Difference' - find out how you can take part
Read MoreThe Virgin Money London Marathon Goes Virtual
Sign up for your Virtual London Marathon experience Sunday 04.10.2020
Read MoreAccessible Online Meetings for those with hearing impairment
Frances Harris talks to us about the difficulties faced by those with NF2 & hearing loss communicating online and solutions
Read MorePipers to Paris - Ride for Neurofibromatosis
Read all about Mr. Cohen's epic 230 mile bike ride to help support those affected with Neurofibromatosis in the UK
Read MoreArtificial Intelligence & Disability Recruitment
Creating fair processes for people with disabilities by the HR teams that are using artificial intelligence/face recognition
Read MoreIt’s a Kind of Magic
Mike Brennan has had to deal with the stigma as well as the symptoms of NF1, which he has battled since he was a young child.
Read More