Ashley’s NF1 story

Hi, I’m Ashley, I’m 32 years young! and am an IT specialist based in London!

I love running and cats (I feel they’re often better than humans).

I always struggled academically in school and thought that I cannot do this and it’s not for me. I always thought I was different in some way.

Side note: I LOVE red pandas!

I got diagnosed with NF Type 1 when I was about 13! When I was on holiday and had a large growth on my neck that appeared out of nowhere after a flight. Upon getting back to the UK, it was a scary time being so young and no one not knowing what was wrong! Big and scary words, like cancer, were mentioned several times by doctors.

After having an examination and a biopsy at the RVI in Newcastle, they noticed that this is in fact NF Type 1, I had always had a lot of café au lait marks but never thought anything of this.

At the moment, I am not under the care as such of any department, like at Guys Hospital (but since doing this I have now asked to be referred there, to learn more about the condition) and to be under a team that fully understands the condition would be also beneficial to me.

I have always loved running but have not really been into it as much over the last several years and wanted to get back doing what I love and an excuse to get healthy so on New Year's Eve, after one or maybe 4 gins, I thought it would be a good idea to sign up for a half marathon! Realizing that I can now lock myself in to this and then I can get back to it.

I was then thinking about a lot of charities that I could do it for that a are close to my heart. I thought, why not NTUK? Reason being, when I mention about this condition to people and I have it, no one really knows what it is, or has heard of it, or very little.

NTUK have been helpful to me, in that they have a lot of information on the site and useful document packs to give to family and my employer, so they can understand more about the condition and how this can affect people.

I went from failing my GCSE to resitting them and passing and I’m now one assignment away from having a degree. I never would have thought this being possible, I just have to know my way of learning was different.

Ashley will be running the Lee Valley Half Marathon to raise Neurofibromatosis Awareness.