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
_800_600_s_c1.png)
Charlotte & Evie’s story
'Sticker Queen' Evie is 4 years old and was diagnosed with NF1 after tests for a 'lazy eye'.
Read More_800_600_s_c1.png)
Luke’s Story
Luke had NF1 since childhood. Now an adult, surgery last year has enabled him to play football and do whatever he wants
Read More_800_600_s_c1.png)
Charlotte’s Story
When Charlotte was 6, she was diagnosed with NF1, along with her brother & dad. Now she is on a mission to raise awareness
Read More
Eden P for healthcare professionals
Healthcare professionals, who provide support to expectant parents with NF1 are invited to take part in the Eden P study
Read More_370x280_800_600_s_c1.jpg)
Nicole’s story
Nicole has NF2, she describes the preparations and the absolute joyful experience of the birth of her son Lewis
Read More
CAR Research - exploring family planning decisions
Research Advisors required to help explore what influences decisions about having children and what support would be helpful
Read More
Corporate Fundraising 2024
Find out some of the different ways your company can support Nerve Tumours UK
Read More
Matthew’s story
Matthew, who has NF2 and is a dedicated Scout, has been awarded the prestigious Cornwell Scout Badge
Read More
Ella’s editorial
Have a read of Ella's editorial as she shares her brave journey against NF1 with us!
Read More