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
_370x280_800_600_s_c1.jpg)
Charlotte’s NF1 story
Charlotte and her brother & dad have NF1. She is running the Shine a Light Marathon during May to raise awareness
Read More
Be seen, be counted: #PicsForThe1in6
Be part of the Neurological Alliance's photo collage, representing people with neurological conditions
Read More
Understand the experience of adults living with Neurofibromatosis Type I with Plexiform Neurofibromas (NF1 PN)
Research to understand the reality of the NF1 PN journey from diagnosis to daily life, and the emotional impact that has
Read More
Nerve Tumours UK Art Drop 17 May 2023
White Label Editions & artist Anna van den Hoelden are fundraising by selling unlimited prints of World Strips III on 17 May
Read More
Stand up for Nerve Tumours UK Comedy Fundraiser
Join us on #WorldNFDay for a night of comedy at the Union Chapel, London
Read More
Prof. Meena Upadhyaya, OBE, shares her memories of attending the Coronation
Read more about a special day for Professor Meena Upadhyaya, Trustee & Member of the Nerve Tumours UK MAB
Read More
Teenage Transition Day, Guy’s Hospital NF Centre
Guy's Hospital Neurofibromatosis Centre celebrate the success of their first teenage day since COVID
Read More
India’s NF2 story & Jasmin’s ultramarathon
India describes her NF2 diagnosis & surgery - her older sister Jasmin is fundraising for NTUK with a 50k ultramarathon!
Read More