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
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma.
Read More
Milton Keynes NF1 Medical Information Day 2026
Register for our Milton Keynes NF1 Medical Information Day on 9 May 2026
Read More
Rare Disease Day 2026: Equity for Rare
A look back on Rare Disease Day: Equity for Rare, 28 February 2026.
Read More
Melanie’s Ironman challenge
Melanie reflects on her journey to complete Ironman Copenhagen, in memory of her cousin Ben who had NF1
Read More
Fyling Fest Fundraiser
Fyling Fest 2025: Sunshine, music & a whole lot of heart in the Rose Garden - all in support of Bea
Read More
Bea’s Story: Courage and Resilience
Bea, 'Bringer of Joy', never stops smiling despite her condition & NF1 related complications - read her story
Read More
Margaret’s Story
Margaret reflects on life with NF and her involvement with the charity since its early days
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