Dayna’s Story
12 August 2019
Dayna's Story
Shortly after I was born it was noticed that my eye kept bulging out after every nap I took. This led to a number of tests being carried out on myself which lead to my diagnosis of Neurofibromatosis Type 1, and also the identification of a brain tumour on my optic nerve. I was then treated with chemotherapy, in which I had to have a port fitted for the treatment.
Sadly, this reduced vision in my left eye and made me go blind in my right when I was only 2.
At 6 years old a tumour was found on my ankle and I had to have “neurofibromatosis specialist surgery”.
Then at 12 I was diagnosed with a brain tumour on the temporal lobe, which led to emergency surgery being needed, this severely affected my memory for a long time.
At the age of 17 I was then diagnosed with a tumour in my back which is currently being monitored by my specialists alongside the tumour that was found on my vagus nerve.
A further two complications from my NF1 is that I have developed both breathing and digestive problems as well.
I'm 20 and have had Neurofibromatosis type 1 since I was 2.
– Dayna"However, despite all this I still maintain all my ambitions and dreams, which I know I can achieve. One of these dreams is to help as many people with Neurofibromatosis as possible, and to possibly help with any further tests and research in the future. "
Filter News
The Boy Who Played Cricket
Take a look behind the scenes of team NTUK's visit to the 'The Boy Who Played Cricket' opening.
Read More
Ella’s Story
Ella shares her insights into campus life with NF; her victories & hurdles & the importance of self- belief.
Read More
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma.
Read More
3BM & Fusion’s Purple Forum nominate Nerve Tumours UK as their Charity of the Year
Take a look inside Purple Forum and how they're raising awareness and funds for the NF community.
Read More
George, Alisya’s & Leo’s NF1 Story
Find out how George and his team at Rolls Royce are raising NF awareness because of NF hero Leo.
Read More
World NF Awareness Month 2025: In Review
A look back at some of the highlights of World NF Awareness Month, May 2025.
Read More
Emily Owen: World NF2 Day
Our charity Ambassador offers her thoughts and guidance on NF2 day
Read More
Shine A Light on NF May 2025
The Shine A Light on NF 2025 awareness campaign had 176 buildings around the UK & the Republic of Ireland lit up blue!
Read More
Mohamed’s NF Story
Mohamed opens up about his NF journey and why he's now thriving after being diagnosed.
Read More