Helpline 07939 046 030

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.

"NF1 has been a gift to me as it is a part of my identity"

– Dexter

Thank you for reading,

Filter News

Filter by Date

Nicole’s NF1 story & skydive

Nicole shares her NF1 journey and her motivation to inspire children with disabilities to achieve whatever they want to do

Read More

Sarah’s NF1 story & Langmead fundraising

Sarah describes her daughter Hannah's NF1 journey and organising a corporate charity day fundraiser at Langmead Herbs

Read More

Study - Resilient Youth with NF

Adolescents with NF (12-17 years old) are wanted for an Online Harvard research project

Read More

CAR Relationships study

CAR survey: support materials for adults with appearance-affecting conditions, focussed on intimacy & romantic relationships

Read More

Glasgow Comedy Night

Last night was the turn of Glasgow's The Stand Comedy Club to host the NTUK Comedy Circuit 2022

Read More

Newcastle Comedy Night

The Stand Comedy Club in Newcastle held a great night of fun and laughter

Read More

Nerve Tumours UK Lottery

Read how the NTUK Lottery helps make a difference to the NF Community

Read More

Manchester Comedy Night

Manchester's Frog & Bucket Comedy Club hosted the 2nd date on the NTUK 2022 comedy circuit

Read More

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