Hi I’m Amy. My NF journey begun at 10, well that’s when we found the first tumour. Doctors can’t be sure if I lived with it my whole life, since, unlike many people with NF, the genetic defect does not run in my family. Lucky me eh!? I am very fortunate that here in the U.K., I am treated by an entire team of NF specialists from Consultants to Nurses to Psychologists I have access to a tonne of support. I am a chatty type of patient, I think too much sometimes. I once asked my Consultant out of all their patients, is mine one of the worst cases of NF she treats? Her answer was “you’re somewhere in the middle”, so this is what NF in the middle looks like.
Amy aged 10 meeting Harry Redknapp after her first surgery
So far, I’ve had 5 tumours treated in the last 22 years. A large tumour in my spine was the first that was found, it was removed two weeks later because it was so large and dangerous. That caused a paralysed left arm sadly. 5 years later, I had 2 acoustic neuromas found which were both shortly treated with radiotherapy. I had a large break between those and my next big job, a brain tumour in 2018, that was a JOURNEY. I was only just getting to my best self again, when another popped up in 2021.
Amy after her surgeries in 2018 and 2021.
I’ve tried to hide away from my NF, the suffering and the side effects I have kept firmly off the internet because I was so embarrassed about how I look, how I move and how I sound. However, when I was diagnosed with the second brain tumour in 2021, I decided I’d share it all.
So I did! I am not sure why I decided to do it, but it’s the best decision I ever made. 99.9% of people have been wonderful, with a small dose of keyboard warriors making smart comments about my facial palsy. It’s been one hell of a journey these past (almost) 23 years since I was diagnosed with NF.
Though the last 6 months have been the hardest of any of the other times I’ve suffered through NF, it’s also been the best. I’ve been documenting my brain tumour surgery (2/9/21) and recovery over on instagram. It got so much attention, people wanted to know more so I’ve been telling my story in detail from the beginning, on YouTube now.
Amy’s social media
I can’t believe how far I have came, 8/9 months ago, I would not dare to show my face online even with make up and filters. But now, there’s been crying, no make up selfies and even (!!!) a full side profile of my palsy side!! It has taken me the longest time to learn to accept myself, warts (or small bumpy tumours!) and all, but I like it! I’ve met so many new and inspiring people, and it’s really changed the way I see myself. I really did hide my whole self for the longest time and I look back now and wonder why.
You can join me on my NF journey on instagram.com/amyversuslife and YouTube https://youtube.com/user/misshelloimamy
This blog has been created as a way to share stories, ideas, positivity and even sprinkle in some science. Everyone is welcome here and warmly encouraged to join us in contributing to our community through this blog. If you would like to add anything (anything at all!) then please contact myself, Grace Gregory, at grace@nf2biosolutions.org and we can pop it up on our blog. Watch this space and please join in helping us all connect and share with one another!