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.
![](/images/common/Grace_Picture3_1024x768.jpg)
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.
![](/images/common/Grace_Picture1_1024x768.jpg)
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
![](https://nervetumours.org.uk/images/made/images/common/robina-weermeijer-3KGF9R_0oHs-unsplash_370x280_800_600_s_c1.jpg)
NF1 stem cell research study
Julieta is carrying out stem cell research to understand brain development in those with NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/FB_IMG_1646043328094_370x280_800_600_s_c1.jpg)
Ava-Lily’s NF1 story
Ava-Lily is thriving at school despite various NF1 related difficulties - read her story
Read More![](https://nervetumours.org.uk/images/made/images/common/image_(12)_370x280_800_600_s_c1.jpg)
Westminster Virtual Rare Disease Day 2022 Reception
NTUK joined the annual international event aimed at raising awareness & highlighting the needs of people with rare diseases
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK_supports_RDD_370x280_800_600_s_c1.jpg)
Rare Disease Day 2022
Nerve Tumours UK joins events showcasing Rare Disease Day, hosted by the Genetic Alliance, on 28 February 2022
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_7612_370x280_800_600_s_c1.jpg)
Runderpants Winchester 2022
The Runderpants fun run makes a successful return to Winchester
Read More![](https://nervetumours.org.uk/images/made/images/common/fruit_fly_370x280_800_600_s_c1.jpg)
NF1 Research study with fly model
How can studying the brain of a fruit fly help with understanding of NF1?
Read More![](https://nervetumours.org.uk/images/made/images/common/2021-10-27_15-11-36_324_370x280_800_600_s_c1.jpg)
Stuart’s Schwannoma Story Part Two
Stuart's update takes us through the operation to remove the Schwannoma, recovery and getting back to marathon training.
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_4619_370x280_800_600_s_c1.jpg)
Sian & Connor’s story
Sian & Connor describe the invaluable support from NTUK during her pregnancy with baby Reuben
Read More![](https://nervetumours.org.uk/images/made/images/common/17397DC99F38479194C0E2ADD6B8CDA8_370x280_800_600_s_c1.jpg)
Anita, aka Fat Lady Slim, is running the London Marathon for NTUK
Anita is fundraising on behalf of niece Sophie & great-niece Lexie who have NF2 by running the London Marathon
Read More