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/Student_Voice_Prize_logo_370x280_800_600_s_c1.jpg)
Student Voice Prize 2021
The 2021 Student Voice Prize opens on 6th October! #DareToThinkRare for the 8th annual essay competition!
Read More![](https://nervetumours.org.uk/images/made/images/common/CAR_parents_image_1_370x280_800_600_s_c1.jpg)
Centre for Appearance Research - Parent Support Materials Study
The Centre for Appearance Research is doing a study on parent support materials - can you help?
Read More![](https://nervetumours.org.uk/images/made/images/common/YPFI_header_picture_2_370x280_800_600_s_c1.jpg)
Centre for Appearance Research - YP Face IT
YP Face IT offers online support for young people with conditions or injuries affecting their appearance
Read More![](https://nervetumours.org.uk/images/made/images/common/Changing_Faces_Logo_370x280_800_600_s_c1.jpg)
Counselling support from Changing Faces
Changing Faces - Counselling support: confidential one to one support sessions for people with a visible difference
Read More![Nerve Tumours UK Community Survey](https://nervetumours.org.uk/images/made/images/templates/placeholder_800_600_s_c1.png)
Nerve Tumours UK Community Survey
This consultation provided direct feedback to the strategy group, to look at how we can continue to provide our services
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_7819_-_Suzi_NF2_-_edit_370x280_800_600_s_c1.jpg)
Suzi’s NF2 story
Suzi used her own NF2 diagnosis to inspire her research into how identity is experienced by people with NF2
Read More![](https://nervetumours.org.uk/images/made/images/common/Emma_Hartley_Liverpool_Fundraiser_Image_5_370x280_800_600_s_c1.jpg)
Emma’s Story
Emma shares her journey with NF after finding out her daughter, Poppy, has been diagnosed with NF Type 1.
Read More![](https://nervetumours.org.uk/images/made/images/common/tegan-mierle-fDostElVhN8-unsplash_preview_800_600_s_c1.jpg)
Tim’s Story: Living With Neurofibromatosis – it’s a family thing
Tim tells us how Nerve Tumours UK proved to be an invaluable resource and support to him and his family as he was growing up
Read More![](https://nervetumours.org.uk/images/made/images/common/Out_Walking_370x280_800_600_s_c1.jpg)
Dalvinder’s 100km Ultra Challenge for NF
Dalvinder on the 100km Ultra Challenge Thames Path walk to raise money for NF
Read More