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
Filter News
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Insights into the work of our support specialists from Mel Murrell
Meet one of our Support Specialists Mel Murrell and read about her impressions on her first year in the role
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World At Her Feet
Christina has wrtiten a blog partly about living with NF1 and partly about her travels. Find it here:
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Arooj: The Fashion Blogger with NF
Arooj Aftab, 22, is an influencer, with NF1, who is known for her baggy fashion style
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Nerve Tumours UK wins Movement for Good award
Find out more about the award and why we received it here:
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Dayna’s Story
Despite suffering many set backs as a result of NF, Dayna still maintains all her ambitions in life. Read her story here:
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Prudential Ride 2019
Thank you so much to all our Prudential Ride 2019 riders! Find out more, including some fantastic photos, here:
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Expertise in Neurofibromatosis: Within Europe
Find out more about the spread of NF experts across Europe:
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New Gene Therapy at a World-Renowned Research Insitute
Find out more about the new gener therapy that both NTUK and NF2 Biosolutions are strongly supporting
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