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

Centre for Appearance Research - YP Face IT
YP Face IT offers online support for young people with conditions or injuries affecting their appearance
Read More
Counselling support from Changing Faces
Changing Faces - Counselling support: confidential one to one support sessions for people with a visible difference
Read More
Nerve Tumours UK Community Survey
This consultation provided direct feedback to the strategy group, to look at how we can continue to provide our services
Read More
Suzi’s NF2 story
Suzi used her own NF2 diagnosis to inspire her research into how identity is experienced by people with NF2
Read More
Emma’s Story
Emma shares her journey with NF after finding out her daughter, Poppy, has been diagnosed with NF Type 1.
Read More
Tim’s Story: Living With Neurofibromatosis – it’s a family thing
Tim tells us how Nerve Tumours UK proved to be an invaluable resource and support to him and his family as he was growing up
Read More
Dalvinder’s 100km Ultra Challenge for NF
Dalvinder on the 100km Ultra Challenge Thames Path walk to raise money for NF
Read More
Diana’s One Month of Rowing for Neurofibromatosis
Diana is taking on an epic 150k rowing challenge - 5k per day to support her daughter Ellie & our NF community
Read More
Autistica Research Festival 2021
See how this year's event went and find out how you can watch the best bits if you couldn't make the conference.
Read More