Nicola’s NF2 Journey
09 December 2019
Nicola's NF2 Journey
Hi, my name is Nicola Richards and I have decided to share my journey since my NF2 diagnosis.
I was diagnosed in 2006, when I was roughly 6/7 years old. When I was diagnosed NF2 was classed as an extremely rare genetic disorder but since has had more research and recognition.
Life from the point of diagnosis has been a rollercoaster. I grew up with several symptoms before I was officially diagnosed, such as being born with a glaucoma (I think that’s how it is spelt), and a retinal detachment, as well as discovering I was deaf in my right ear at 4 years old. It was only when the tumours were discovered that they figured out NF2 was the main reason for my hearing loss. I spent a lot of time in and out of hospitals, I remember my first ever operation as if it was yesterday, I remember the Dr pinning me to a table because I refused to let them put a needle in my foot and I remember waking up and not being able to move or talk. After surgery I spent that 9 and a half months paralysed, learning to walk again, moving from ward to ward and even attending school in hospital. Since then there was a treatment developed to help shrink the tumours called Avastin, I have been on this treatment for around 12 years now and have gone from two major surgeries a year to none (only minor removals of schwannomas). I roughly have over 18 tumours on the brain alone, several in my spine and one in my arm and leg. I have facial palsy and body weakness as well as no balance.


NF2 has stripped me of my hearing. When I was 15 my hearing started getting worse to the point that I was run over due to the fact that I could not hear an oncoming car. From that point everything got dramatically worse for myself. I fell into depression and isolation and had social and deaf anxiety. I quit college twice and fell into despair about how I could cope with being deaf, how I’d never start a family or no one would love me because I was deaf, I thought I had these tumours that no one would want to deal with. However, I then got help from my genetics Doctor, went back to college to study media production, passed three years at college with a Triple distinction, and got accepted into my dream university to study film and TV production! I am halfway through my second year and life is getting so much more manageable regarding my hearing and the tumours.
So, this is my story, and why I started to create YouTube videos: My Instagram @signwithnic, is used to raise awareness of deafness and will soon be used to generate awareness for NF2 ( there is a secret documentary coming for that). I created the YouTube videos in hope that it will encourage deaf / HoH people through the message, that even though it might be hard now, it will not be hard forever, you are most definitely NOT alone. I talk about the struggles and give advice to people regarding deafness. I have started looking at a masters degrees in business management, I have
– Nicola"However, I then got help from my genetics Doctor, went back to college to study media production, passed three years at college with a Triple distinction, and got accepted into my dream university to study film and TV production! I am halfway through my second year and life is getting so much more manageable regarding my hearing and the tumours."
Filter News

Sunflower lanyards to support patients and visitors with hidden disabilities
Read about the new lanyards being given out at Heathrow, Sainsbury's and Gatwick to help support those with disabilities
Read More
NTUK attends Small Charity Week
Nerve Tumours UK attended Small Charity Week, find out more about the week and why we attended here:
Read More
Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the National NF2 CQuinn Meeting in Manchester.
Have a read about what was talked about at this year's National NF2 CQuinn Meeting in Manchester
Read More
Nerve Tumours UK adds BrowseAloud to their website
Have a read about the new software we have uploaded to our website in order to make it more accessible to everyone.
Read More
11 year old inspired to run 31 miles within 8 hours for his brother who has NF
Have a read about young Will's remarkable achievement that has been inspired by Adam Jacob's story on our website
Read More
Simon’s Story
Have a read of Simon's Story and his desire to help NF2 Bio Solutions find a cure for NF2:
Read More
Steve Brine MP helps spread awareness for Nerve Tumours UK
The Burbridge Family recently met up with MP Steve Brine to help spread awareness for NF. Find out more here:
Read More
Meet Tom
Tom Hazell is 37, works in IT, lives in Essex with his long-term partner, he has NF2/Schwannomatosis Find out more here:
Read More
A Gamble Across Britain
James will be cycling the length of the country this September- that's 980 miles! Find out more here:
Read More