Jen’s NF1 story

My parents first spotted that I had café au lait patches when I was around one month old, but I was not formally diagnosed with NF1 until late 2007, when I was ten years old.

Before I attended the NF clinic at Guy’s Hospital, and received my diagnosis, there was quite a lot of confusion over whether I had NF1 or NF2, or if it was something else entirely.

I have grown up with the continued support of a local paediatrics team, and later on the NF Clinic, under the care of Professor Ferner and Dr Sheerin, as well as their fantastic team of nurses. Through them, I have learnt a great deal more about my condition, and what it means for those of us who have it. This has made me a lot more confident when talking about it, and planning for my future. The team at Guy’s are always happy to address any concerns I may have, and answer my questions. I honestly can’t thank them enough for all the support they have given me over the past fifteen years!

Since being transferred under the team from the local paediatrics clinic, I have successfully completed my GCSEs and A Levels, and have gone on to obtain a 1st class degree in BA Geography from the University of Brighton, and an MA in Town Planning from LSBU.

... so that Nerve Tumours UK can continue to provide support to people like me as they go through life. When it comes to ensuring that those with a diagnosis (and their family, friends, school, workplace) are kept informed about NF and what it means for them on an individual level and more widely, their work is crucial. Not much is known about NF, and I am hoping that the funds I raise go some way to change that.

London to Brighton Bike Ride 2023 

Swim Serpentine 2023

Next May, I will be taking part in RideLondon-Essex!

Interested in joining Jen? Register your interest!