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/IMG_0162_cropped_370x280_800_600_s_c1.jpg)
Christmas Message from the Nerve Tumours UK team
Thank you from all of us at Nerve Tumours UK
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_3668_370x280_800_600_s_c1.jpg)
Specialist NF Nurses/ Advisors’ Conference 2023
Find out more about this year's meeting with our Nurses
Read More![](https://nervetumours.org.uk/images/made/images/common/PXL_20231124_140752643_370x280_800_600_s_c1.jpg)
National NF2 Meeting 2023
A report from the 2023 England NF2 meeting, with healthcare professionals & charities working together for the NF2 community
Read More![](https://nervetumours.org.uk/images/made/images/common/Side_effects_of_Avastin_2_370x280_800_600_s_c1.jpg)
Avastin Side Effects
Jo has collated shared personal experiences, with medical and general advice on Bevacizumab (brand name Avastin)
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_8394_correct_escalator_370x280_800_600_s_c1.jpg)
David’s Story - Community and Acceptance
David contacted NTUK after seeing our advertising campaign at King's Cross Station in London last year. Read his story:
Read More![](https://nervetumours.org.uk/images/made/images/common/Clare_Dhillon_370x280_800_600_s_c1.jpg)
Meet Clare
Clare is a Specialist NF Nurse based at Ryegate Children's Centre at Sheffield Hospital, covering the South Yorkshire region
Read More![](https://nervetumours.org.uk/images/made/images/common/Tracey_Kenyon_370x280_800_600_s_c1.jpg)
Tracey, Specialist NF Nurse
Meet Tracey. She is based in Southampton & covers Hampshire, Dorset, West Sussex (part), Wiltshire and the Isle of Wight.
Read More![](https://nervetumours.org.uk/images/made/images/common/carolyn-smyth_370x280_800_600_s_c1.png)
Meet Carolyn
Specialist NF Advisor Carolyn is based in Birmingham and covers the West Midlands, Shropshire and Staffordshire.
Read More![](https://nervetumours.org.uk/images/made/images/common/NF_Community_collage_370x280_800_600_s_c1.jpg)
Today is Giving Tuesday
Call out by Karen Cockburn, Charity Director, to donate and support the NF Community
Read More