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.

Joanna’s story

Joanna highlights the importance of women with NF1 receiving mammograms, and being able to train for the 2023 London Marathon

Mobile Device Usage by Young Children with Special Educational Needs (SEN) or Disabilities in Their Home

Research: exploring current use of mobile devices in the home - parents' perspectives & experiences

NF2 and Radiotherapy

Research: Studying the risk of serious side effects of radiotherapy in people with NF2

Sally’s NF1 story

Sally tells a story that will resonate - devastation at diagnosis, gratitude for incredible support & making the most of life

National NF2 Meeting

A report from the annual National NF2 meeting, with NTUK in attendance

NF International and National meetings in Manchester

NTUK reports back from the NF Patients Community Day and the 20th European Neurofibromatosis Meeting in Manchester

Mindful Parenting Study

Research study: Mindful Parenting Programme for parents or carers of children aged 4-16 living with a visible difference

Adam Buxton and some colleagues - NTUK Comedy Night

Join us at the Union Chapel, London on Thursday 24th November for the latest comedy night to celebrate 40 years of NTUK

We know 26, 500 people who need your help

To expand our Specialist Neurofibromatosis Network, we need to continue raising awareness of what we do

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.