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.

Study - Resilient Youth with NF

Adolescents with NF (12-17 years old) are wanted for an Online Harvard research project

Jamie’s NF1 story

Jamie was inspired by reading NTUK stories and is now using his own experiences to help raise awareness of Neurofibromatosis

CAR Relationships study

CAR survey: support materials for adults with appearance-affecting conditions, focussed on intimacy & romantic relationships

Glasgow Comedy Night

Last night was the turn of Glasgow's The Stand Comedy Club to host the NTUK Comedy Circuit 2022

Newcastle Comedy Night

The Stand Comedy Club in Newcastle held a great night of fun and laughter

Nerve Tumours UK Lottery

Read how the NTUK Lottery helps make a difference to the NF Community

Manchester Comedy Night

Manchester's Frog & Bucket Comedy Club hosted the 2nd date on the NTUK 2022 comedy circuit

Call for evidence for new 10-year plan to improve mental health

The government has committed to develop a new cross-government, 10-year plan for mental health and wellbeing

Medical Photography of dermatological conditions - research

Research study: Patient perceptions of medical photography of dermatological conditions

Grace’s NF1 story - Nothing stops me

My name is Grace, I am 18 years old. I was diagnosed with Neurofibromatosis Type 1 when I was 2 years old.

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.