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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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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