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/Helen_Tomkins_370x280_800_600_s_c1.jpg)
Meet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
Read More![](https://nervetumours.org.uk/images/made/images/common/Rebecca_Rennison_370x280_800_600_s_c1.jpg)
Meet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK_Neuro_Alliance_Huntingtons_logos_370x280_800_600_s_c1.jpg)
World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
Read More![](https://nervetumours.org.uk/images/made/images/common/research_images_370x280_800_600_s_c1.jpg)
CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More![](https://nervetumours.org.uk/images/made/images/common/NF_Academy_group_shot_3_370x280_800_600_s_c1.jpg)
NF Academy 2023 - Ella’s Blog
Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe
Read More![](https://nervetumours.org.uk/images/made/images/common/Sadali__Sanjana_370x280_800_600_s_c1.jpg)
University of Manchester Research
Read about the latest PHD research, involving Nerve Tumours UK, at the University of Manchester
Read More![](https://nervetumours.org.uk/images/made/images/common/Manchester_Uni__NHS_logo_370x280_800_600_s_c1.jpg)
New Research Study for Children and Young People with NF1
Find out more about the study and how you can participate here
Read More![](https://nervetumours.org.uk/images/made/images/common/national-cancer-institute-bwMhq_itmMU-unsplash_370x280_800_600_s_c1.jpg)
Neurofibromatosis Type 2 name change
The new name for Neurofibromatosis Type 2 is NF2-related-Schwannomatosis (NF2)
Read More![](https://nervetumours.org.uk/images/made/images/common/Jensen_1_370x280_800_600_s_c1.jpg)
Jensen’s NF1 story
Stuart describes Jensen's first days post birth, subsequent diagnosis of NF1 plus his & wife Claire's hopes for his future
Read More