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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NF Said
Daisy takes on a 38-mile running challenge for her sister Millie, 1 mile a day for every person diagnosed with NF2 a year
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Love Yourself - Hour of Power in Support of the NF community
Get your sweat on and spread the love this Valentine's day for our NF community!
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Pat’s NF Fundraiser Walk
Read all about Patrick's incredible fundraising efforts to help others affected by NF!
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Laura’s Marathon effort!
Laura beats our 26.5 mile challenge and takes it to the next level - matching miles with donations, find out what she's up to
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Research call: Does neurofibromatosis affect how you feel about your body?
Find out how you can improve self-help methods for people living with neurofibromatosis
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Stitched up by Celia
Get inspired by Celia's creative online haberdashery shop for Nerve Tumours UK!
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NF1 with Plexiform Neurofibromas Study: information for patients and carers
Find out how you can help shape the future of NF1 healthcare
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Changing Faces Impact of Covid Survey
Share your experience of covid19 with Changing Faces and help shape the support you need
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Be as creative as Faye – Follow her social distance fundraising example!
Be inspired by Faye & take on your own creative fundraising idea this lockdown!
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