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
_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
Repurposing anti-retroviral drugs to treat NF2 related tumours Retreat Study
Join a brand new study treating tumours in NF2 patients.
Read More_800_600_s_c1.png)
Nerve Tumours UK joins the Neurological Alliance of Scotland
Nerve Tumours UK joins the Neurological Alliance of Scotland.
Read More_800_600_s_c1.png)
Brain scans to give crucial insight into childhood genetic disease
New funding secured for exciting new global research initiative.
Read More