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.
![](/images/common/nicola-2Desktop-1600-x-900-px.png)
![](/images/common/nicola-2Page-Preview-800-x-500-px.png)
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
![](https://nervetumours.org.uk/images/made/images/common/Manchester_comedy_night_collage_370x280_800_600_s_c1.jpg)
Manchester Comedy Night
Manchester's Frog & Bucket Comedy Club hosted the 2nd date on the NTUK 2022 comedy circuit
Read More![](https://nervetumours.org.uk/images/made/images/common/Logo_of_United_Kingdom_Department_of_Health_and_Social_Care_370x280_800_600_s_c1.jpg)
Call for evidence for new 10-year plan to improve mental health
The government has committed to develop a new cross-government, 10-year plan for mental health and wellbeing
Read More![](https://nervetumours.org.uk/images/made/images/common/Cardiff_University_logo_logotype_370x280_800_600_s_c1.jpg)
Medical Photography of dermatological conditions - research
Research study: Patient perceptions of medical photography of dermatological conditions
Read More![](https://nervetumours.org.uk/images/made/images/common/collage_370x280_800_600_s_c1.jpg)
#BackThe1in6
Read the My Neuro Survey findings from the Neurological Alliance & sign the petition for a Neuro Taskforce to deliver change
Read More![](https://nervetumours.org.uk/images/made/images/common/20220517_154319_370x280_800_600_s_c1.jpg)
Austin’s NF1 story
Austin's mother, Katie, describes how local biker clubs have helped to support Austin since his NF1 diagnosis
Read More![](https://nervetumours.org.uk/images/made/images/common/comedy_circuit_2022_cover_370x280_800_600_s_c1.jpg)
NTUK Comedy Circuit 2022
Three more dates for your diary: Manchester 14/6, Newcastle 12/7, Glasgow 14/7. Altogether now: "Happy birthday NTUK!"
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_0480_370x280_800_600_s_c1.jpg)
RideLondon-Essex 2022
Thank you to our RideLondon-Essex 2022 cyclists! Click here for some great photos from the day
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG-20210510-WA0022_370x280_800_600_s_c1.jpg)
Pat’s Triathlon Challenge
Pat is taking on a 3 day triathlon style challenge to raise awareness & funds for Neurofibromatosis research & support
Read More![](https://nervetumours.org.uk/images/made/images/common/Emily_Owen_370x280_800_600_s_c1.jpg)
World Neurofibromatosis Type 2 Day and 40 Years of NTUK
A celebration and call out to get involved, ask questions and join the community with Emily Owen
Read More