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/TSL_group_fundraising_370x280_800_600_s_c1.jpg)
TSL’s Charity of the Year
Specialist Nurse Tracey Kenyon launches TSL’s corporate funding to introduce NTUK & welcome guest of honour, 2 year old Evie
Read More![](https://nervetumours.org.uk/images/made/images/common/article_preview_image_370x280_800_600_s_c1.jpg)
Online – Accessibility – We have the tools to help!
The NTUK website has accessibility tools to give you easier access to online & digital content
Read More![](https://nervetumours.org.uk/images/made/images/common/kristine-wook-bZL9bLAZa5I-unsplash_370x280_800_600_s_c1.jpg)
My life with Pheo
This story, written by someone with NF1, describes symptoms leading to a phaeochromocytoma diagnosis
Read More![](https://nervetumours.org.uk/images/made/images/common/inform_your_GP_370x280_800_600_s_c1.jpg)
Resources Survey: Initial Diagnosis 2023
We received many responses to our survey asking what would you have found helpful after your initial diagnosis
Read More![](https://nervetumours.org.uk/images/made/images/common/Karen__NF_Community_370x280_1_800_600_s_c1.jpg)
Community Fundraising Call Out
Calling all community fundraisers - we need your help, please!
Read More![](https://nervetumours.org.uk/images/made/images/common/Awareness_Day_group_photo_370x280_800_600_s_c1.jpg)
Owen family Awareness Event
The event featured guest speaker Prof. Meena Upadhyaya OBE, Member of our Board of Trustees & Medical Advisory Board
Read More![](https://nervetumours.org.uk/images/made/images/common/Wilbur_370x280_800_600_s_c1.jpg)
Running for Wilbur
Tim is running the Guildford 10k in October, to show support to his son Wilbur who has NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/Alice_Allsop_370x280_800_600_s_c1.jpg)
Alice’s NF studies
Alice is researching healthcare experiences of individuals with NF1 for her Genetic & Genomic Counselling MSc
Read More![](https://nervetumours.org.uk/images/made/images/common/CAR_parent_toolkit_1_370x280_800_600_s_c1.jpg)
Centre for Appearance Research - The Parenting Toolkit
Research evaluation to find out how effective ‘The Parenting Toolkit’ is at supporting parents of children with NF
Read More