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
![](https://nervetumours.org.uk/images/made/images/common/2021-10-27_15-11-36_324_370x280_800_600_s_c1.jpg)
Stuart’s Schwannoma Story Part Two
Stuart's update takes us through the operation to remove the Schwannoma, recovery and getting back to marathon training.
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_4619_370x280_800_600_s_c1.jpg)
Sian & Connor’s story
Sian & Connor describe the invaluable support from NTUK during her pregnancy with baby Reuben
Read More![](https://nervetumours.org.uk/images/made/images/common/17397DC99F38479194C0E2ADD6B8CDA8_370x280_800_600_s_c1.jpg)
Anita, aka Fat Lady Slim, is running the London Marathon for NTUK
Anita is fundraising on behalf of niece Sophie & great-niece Lexie who have NF2 by running the London Marathon
Read More![](https://nervetumours.org.uk/images/made/images/common/Rosalie_Ferner_370x280_800_600_s_c1.jpg)
Neurofibromatosis 1 in the 21st Century
Professor Rosalie Ferner delivers key speech “Neurofibromatosis 1 in the 21st Century” to the BPNA 2022 Annual Conference
Read More![](https://nervetumours.org.uk/images/made/images/common/image_(4)_370x280_800_600_s_c1.jpg)
The International Rare Disease Showcase 1st – 3rd February 2022
The International Showcase is a unique & important event, with interactive sessions taking place from 1st-3rd February 2022
Read More![](https://nervetumours.org.uk/images/made/images/common/Grace_Picture2_370x280_800_600_s_c1.jpg)
Grace’s NF1 story - Nothing stops me
Grace tells us how her NF1 hasn't stopped her from being active and achieving her goals
Read More![](https://nervetumours.org.uk/images/made/images/common/Mia_family_370x280_800_600_s_c1.jpg)
Mia’s NF1 story
Bridie & Warren describe their 17 month old daughter Mia's diagnosis with NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/Ellie_on_rowing_machine_370x280_800_600_s_c1.jpg)
Richard & Diana’s 1,000,000 metre new rowing challenge
Diana & Richard have taken on a 1,000,000 metre rowing challenge in 100 days to raise funds & awareness
Read More![](https://nervetumours.org.uk/images/made/images/common/BZQO9932_370x280_800_600_s_c1.jpg)
A Message from our Charity Director
A message from Karen, our Charity Director, on looking forward to a special 2022
Read More