Dexter’s Story
29 October 2020
Hello, my name is Dexter, I am nineteen years old, I'm a student and I have Neurofibromatosis Type 1

When I was much younger, I remember the joy of going in for my annual MRI scans. How I enjoyed them, the Doctors and Nurses were always nice and caring and the treatment was always great. However, throughout secondary school, I became very self-conscious and went to great lengths to hide that I have a disability. All for the sake of fitting in. What I didn’t realise then was that we are all different in life, which is something we often hear. I only came to the realisation of this a few months ago at my supported pathways internship at the National Theatre. I was greatly inspired by the diversity of people with different disabilities, who proudly showed the world who they were.
None of my parents have NF, so I am the first one in my family to have been diagnosed with NF1. There were times in the past when I was bullied because of it, which often got to be quite tearful as I was very sensitive growing up. I would never go to a swimming pool without being fully clothed. I would always worry about my future and what may become of it. In the past I was adamant that I wanted to have surgery to remove it, however now I am glad that I did not go through with it. My faith (Christianity) really helps me to feel assured.
One scripture that comes to mind is Psalm 139:13-14 “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well”

I am currently a student at University doing a foundation year in Media Productions. I hope to become a filmmaker one day, creating relatable films/ documentaries which resonate well with people with NF, as well as allowing them to feel more comfortable in their skin. We all have personal differences which vary from person to person.
– Dexter"NF1 has been a gift to me as it is a part of my identity"
Thank you for reading,
Dexter
Filter News

Best Film Nomination “Shine A Light on Neurofibromatosis” PM Society Digital Awards
Join the awards ceremony virtually this Wednesday 16th September
Read More
Act it Out Prototype App Trial
If you are experiencing difficulties related to NF & 'Visible Difference' - find out how you can take part
Read More
The Virgin Money London Marathon Goes Virtual
Sign up for your Virtual London Marathon experience Sunday 04.10.2020
Read More
Accessible Online Meetings for those with hearing impairment
Frances Harris talks to us about the difficulties faced by those with NF2 & hearing loss communicating online and solutions
Read More
Pipers to Paris - Ride for Neurofibromatosis
Read all about Mr. Cohen's epic 230 mile bike ride to help support those affected with Neurofibromatosis in the UK
Read More
Artificial Intelligence & Disability Recruitment
Creating fair processes for people with disabilities by the HR teams that are using artificial intelligence/face recognition
Read More
It’s a Kind of Magic
Mike Brennan has had to deal with the stigma as well as the symptoms of NF1, which he has battled since he was a young child.
Read More
Centre for Appearance Research (CAR) and The VTCT Foundation Virtual Showcase 28th July 2020
Get the latest updates on the Centre for Appearance Research's work into helping people with Visible Difference
Read More
Specialist Neurofibromatosis Nurse - Wales
Find out more about our latest position available in Wales
Read More