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
Ian’s Story
Read Ian's story and why he's going the extra mile for NF awareness and his daughter Emily
Read More
London Marathon 2025
Meet our 2025 London Marathon fundraisers—each running to support those affected by NF. Read & share their stories.
Read More_800_600_s_c1.png)
Understanding the Impact of Nerve Tumours UK: Insights from Our Latest Survey
Take a look at all the insights from our latest community surveys
Read More_800_600_s_c1.jpg)
Rare Disease Day 2025
All the highlights, updates and impact from NTUK's involvement in Rare Disease Day 2025
Read More
William & Andrew’s NF1 Story
Andrew's using his own obstacles in life to inspire his son William on his NF1 journey.
Read More
First Diagnosis Survey
A survey to improve NF diagnosis support by gathering feedback on early experiences and concerns from those affected.
Read More_800_600_s_c1.jpg)
Working with the hospitality industry & creating safe spaces for everyone
Read More
Visible Differences: Changing The Narrative
Nerve Tumours UK joins multi-organisational workshop to enhance support for those with a visible difference
Read More