Jen’s NF1 story
12 March 2024
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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.
These are some of my proudest achievements and I think they clearly show that you shouldn’t allow anything to define you, as you are capable of anything you put your mind to!
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This is why I have chosen to fundraise for Nerve Tumours UK (by cycling the London to Brighton bike ride next September!)
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... 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
It feels incredible to have completed two huge challenges in the space of a week,
London to Brighton Bike Ride 2023
but even better knowing that my efforts have helped raise valuable funds for Nerve Tumours UK.
Nothing can compare to this feeling,
Swim Serpentine 2023
and I’m already looking to sign up to more events next year
in support of this fantastic charity and everything they do for people like me!
In May, I will be taking part in RideLondon-Essex!
Share YOUR story for Rare Disease Day
Nerve Tumours UK joined in this year's Rare Disease Day theme -"Facts behind the Stories", and highlights the diverse outcomes and impacts that NF can have on each individual and their loved ones.
Follow in Jen's footsteps and share YOUR story by emailing info@nervetumours.org.uk. This is one of the stories that we have received for Rare Disease 29.02.2024 Day 2024. Help us make #MakeNFVisible.
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