Nicola’s NF2 Journey

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