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

Dan’s Story
Dan wants everyone to know that NF1 comes in different forms. Have a read of his courageous story here:
Read More
#MyVisibleDifference Changing Faces
#MyVisibleDifference Changing Faces - Nerve Tumours UK attended the of My Visible Difference Report by Changing Faces
Read More
Shine a Light 2019 Success!
Check out some of the stunning photos from our extremely successful Shine a Light On Neurofibromatosis 2019 campaign
Read More
Nerve Tumours UK attends Royal College of Nursing Congress
Find out more about the RCN Congress and Nerve Tumours UK participation here:
Read More
Ava’s amazing work on World NF Awareness Day
15 year old Ava managed to generate awareness across the World as part of WNFAD read more about it here:
Read More
Face Equality International Week
Find out more about the crucial campaign Face Equality International Week
Read More
Face Equality International - Shine A light on Neurofibromatosis
This year International Face Equality Week overlaps with World NF Awareness Day. Have a read of our collaboration here:
Read More