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. "
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Ava’s amazing work on World NF Awareness Day
15 year old Ava managed to generate awareness across the World as part of WNFAD read more about it here:
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Face Equality International Week
Find out more about the crucial campaign Face Equality International Week
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Face Equality International - Shine A light on Neurofibromatosis
This year International Face Equality Week overlaps with World NF Awareness Day. Have a read of our collaboration here:
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Shine a Light on Neurofibromatosis 2019 on big screens near you!
Check out the areas where you can find eletronic billboards across the UK promoting our Shine a Light message
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Mary Thomas wins Specialist Nurse of the Year 2019!
Have a read about the Guy's and St Thomas' Celebration of International Nurses Day here
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Luke and his NF Ninjas
Have a read of Luke's story of growing up with NF and how he plans to bring his chidren up proud of their NF as well.
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Stannington Community Association’s Easter Fête
Stannington Community Association's Easter Fête was a success! Read about this years superb event here:
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London Marathon 2019: 26 hard miles for 26,500 people affected
Thank you so much to all our incredible Marathon runners for going the extra mile (or 26)!
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Take a look at our new YouTube Channel
Take a look at our new YouTube channel and how to subscribe here
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