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

Be seen, be counted: #PicsForThe1in6
Be part of the Neurological Alliance's photo collage, representing people with neurological conditions
Read More
Understand the experience of adults living with Neurofibromatosis Type I with Plexiform Neurofibromas (NF1 PN)
Research to understand the reality of the NF1 PN journey from diagnosis to daily life, and the emotional impact that has
Read More
Nerve Tumours UK Art Drop 17 May 2023
White Label Editions & artist Anna van den Hoelden are fundraising by selling unlimited prints of World Strips III on 17 May
Read More
Stand up for Nerve Tumours UK Comedy Fundraiser
Join us on #WorldNFDay for a night of comedy at the Union Chapel, London
Read More
Prof. Meena Upadhyaya, OBE, shares her memories of attending the Coronation
Read more about a special day for Professor Meena Upadhyaya, Trustee & Member of the Nerve Tumours UK MAB
Read More
Teenage Transition Day, Guy’s Hospital NF Centre
Guy's Hospital Neurofibromatosis Centre celebrate the success of their first teenage day since COVID
Read More
India’s NF2 story & Jasmin’s ultramarathon
India describes her NF2 diagnosis & surgery - her older sister Jasmin is fundraising for NTUK with a 50k ultramarathon!
Read More
New ways to treat NF1 tumours with existing drugs
Researchers at the Living Systems Institute, University of Exeter, UK are researching new ways to treat NF1 tumours
Read More