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/Recruit_advert_Family_Planning_and_decision_making_370x280_800_600_s_c1.jpg)
CAR research family planning decision making
This CAR UWE research explores family planning & decision making for people with a visible difference which can be inherited
Read More![](https://nervetumours.org.uk/images/made/images/common/National_Theatre_RR_(4)_skyline_370x280_800_600_s_c1.jpg)
Shine A Light 2024
The Shine A Light 2024 campaign had 133 buildings around the UK & the Republic of Ireland lit up in blue!
Read More![](https://nervetumours.org.uk/images/made/images/common/Juliette_Buttimore_370x280_800_600_s_c1.jpg)
Guidance on sudden hearing loss in NF2-related Schwannomatosis (NF2-SWN)
Symptoms, diagnosis & treatment of sudden hearing loss, from Juliette Buttimore, Nurse Practitioner NF2 Service Addenbrooke's
Read More![](https://nervetumours.org.uk/images/made/images/common/Emily_Owen_370x280_1_800_600_s_c1.jpg)
NF2 Day 2024 by Emily Owen
A reflective poem for World NF2 Day, to celebrate people living with NF2
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK_21358_Thomas_Young_Campaign_Web_Banner_650x992_73_dpi__370x280_800_600_s_c1.jpg)
Everybody is born a Champion
NTUK & RBH's 3rd campaign features GB Paralympian Thomas Young, who has NF1, and celebrates those living with NF
Read More![](https://nervetumours.org.uk/images/made/images/common/Connor_1_370x280_800_600_s_c1.jpg)
Connor’s NF2 story
Connor's mum Tracy's maternal instincts proved invaluable when fighting to get Connor's symptoms investigated
Read More![](https://nervetumours.org.uk/images/made/images/common/20240504_142236_370x280_800_600_s_c1.jpg)
Jo’s Shine A Light Family Fun Day
The family fundraiser was supported by Dr Shruti Garg, member of the Nerve Tumours UK Medical Advisory Board
Read More![](https://nervetumours.org.uk/images/made/images/common/GMcr4r_W8AAaGZd_370x280_800_600_s_c1.jpg)
Erin’s 24 hour charity live stream
Erin has NF1 and is raising awareness with a 24 hour live charity stream to Shine A Light on NF
Read More![](https://nervetumours.org.uk/images/made/images/common/image1_(17)_370x280_800_600_s_c1.jpg)
Tate’s Shine A Light Bikeathon
Tate's 4th NTUK fundraiser was a Shine A Light Bikeathon, having learnt to cycle in just 3 weeks!
Read More