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

Today is Giving Tuesday
Call out by Karen Cockburn, Charity Director, to donate and support the NF Community
Read More
Runderpants fun run
Get your Runderpants here! Set up a fun run wearing some special fundraising pants
Read More
Avastin Side Effects
Jo highlights Avastin side effects, from experience of her son Oscar's treatments, plus shared testimonies from others
Read More
Olivia’s NF1 story
Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses
Read More
2023 Awareness Campaign
Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.
Read More
Disclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebeca Rennison
Read More
Jo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
Read More
World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
Read More
CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More