Stories of NF: Sam P.

I was diagnosed with NF1 at my 18-month-old pediatrician check-up. My dad (Martin) was diagnosed with NF1 on the same day. Due to NF, I have severe headaches, back pain due to a slight curvature and some learning needs, problems with itching and tiredness. I’m trying not to think of the future, just taking each day as it comes.

My dad is a chef and he makes Christmas Puddings each year which he sells to raise money for NF1. He’s also a trustee for a UK NF1 charity called Childhood Tumour Trust, where they offer support for those affected with NF1 and their families. I have been to a few of the camps ran by the charity and have helped out by making some films. I have been on radio stations to raise awareness of the condition and held presentations at local organizations like the Rotary Club International about NF1.

I want to let people with NF1 know that the condition shouldn’t hold you back from following your ambitions and dreams and that determination can prove people wrong. Just got to keep going and prove to people you can. I was told I may be short but I’m now 6 ft 4 in. I was told that my grades from school wouldn’t let me do the advanced college course I dreamed of doing, but after I spoke to the lecturer of the course and the Dean, I showed them my Instagram, YouTube and some videos I’ve made. They were impressed and let me do the course. I graduated last year.

I am a happy person who gets on well with others, I love to make films and take photographs. I love clothes, films and music. I play drums, guitar and bass guitar. I have made music videos for a couple of small UK bands who I know. I have also done some Instagram films for some local businesses. As well as my filming, I work as a teacher in a drum school which involves teaching maths to kids through drumming, I also make drumming videos and edit them for the school’s app and website. I am in a band with my brother and two friends called ‘Kiss Currency’ and we have just released our first single called ‘Violet’ which has already been played on the. Quite a big deal in the UK! All these things make me happy especially spending time with my girlfriend, family, friends & my dog Kaiba.