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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A Big “Thanks” for Team Nerve Tumours UK running the London 2020 Marathon!
We want to give a great big thank you to all of you who took part in this year's Virtual London Marathon!
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How To Use Lipspeakers – Support For Those Affected By Hearing Loss
Frances Harris at Bridge Lipspeaking shares how lipspeaking can help those with hearing loss or total deafness caused by NF2
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Living with Neurofibromatosis Type 1: An Anthropological Study
Get involved and share your story to help increase cross-cultural understanding and awareness of NF1
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Nimo’s NF1 Story
Read Nimo's incredible journey of coming to terms living with NF1 & how Nerve Tumours UK has changed her life for the better
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Georgia’s Schwannoma Story
Read Georgia's inspirational Schwannoma story and how she had to fight for her diagnosis
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Voices of Visible Difference #YoureNotAlone Men’s Campaign
Two-thirds of men with visible difference are affected in their day to day life. Read more
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Childhood Neurological Conditions Survey
Find out how you can help shape the future of treatment for Childhood Neurological Conditions such as Neurofibromatosis
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We’re Here for You, Our NF Community.
A big thank you from Karen our Charity Director - your support has been amazing!
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Global Genes LIVE!
Join Global Genes September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit.
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