Megan’s Story
28 May 2020
My name is Megan. I'm 19 and I was diagnosed with NF1 and mild Scoliosis when I was 11. My NF1 was discovered when I was seeing my paediatrician for something completely different. I'm forever greatful to him for knowing about the condition and recognising it as otherwise, I still may not have known about it to this day.
Since my diagnosis, they've discovered through MRI scans some fibromas in my brain, which are being closely monitored by the amazing neurosurgery team at The Queen Elizabeth hospital. I'm always grateful for everything my doctors have done for me- they've kept me informed, reassured me and made sure that everything was explained to me in regards to treatment options.
Despite my NF1, I am living life to the full and doing the things that I love. I have a scary acting job, I'm studying to be a children's nurse and I'm making the best out of every day. NF1 is a part of who I am, but it doesn't define or control me and I hope that one day we will #EndNF
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Christmas Card Competition 2019
Check out this year's Christmas Card Competition and how to enter
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Sunflower lanyards to support patients and visitors with hidden disabilities
Read about the new lanyards being given out at Heathrow, Sainsbury's and Gatwick to help support those with disabilities
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NTUK attends Small Charity Week
Nerve Tumours UK attended Small Charity Week, find out more about the week and why we attended here:
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Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the National NF2 CQuinn Meeting in Manchester.
Have a read about what was talked about at this year's National NF2 CQuinn Meeting in Manchester
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Nerve Tumours UK adds BrowseAloud to their website
Have a read about the new software we have uploaded to our website in order to make it more accessible to everyone.
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11 year old inspired to run 31 miles within 8 hours for his brother who has NF
Have a read about young Will's remarkable achievement that has been inspired by Adam Jacob's story on our website
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Simon’s Story
Have a read of Simon's Story and his desire to help NF2 Bio Solutions find a cure for NF2:
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Steve Brine MP helps spread awareness for Nerve Tumours UK
The Burbridge Family recently met up with MP Steve Brine to help spread awareness for NF. Find out more here:
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Meet Tom
Tom Hazell is 37, works in IT, lives in Essex with his long-term partner, he has NF2/Schwannomatosis Find out more here:
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