Meeting Megan
25 June 2020
Hey hope you are all okay and had a good NF awareness day despite the Lockdown. (Flashback to May 17th 2020)
“Today is world Neurofibromatosis Awareness day. This is a condition that I have lived with every day of my life! It is something I will have to live with until the day I die. This post isn't pretty, but it is the harsh reality of my condition." You can view the video I created about my life with NF1 on my Facebook page - Megan K's adventures:
It is what my life has revolved around for years. It is what drives me forward, it is my personal mountain to climb. It will not beat me; I will not let it!
I am ambitious, I have big plans. NF sucks, it really does. So far, I have not needed chemotherapy, not everyone with this condition avoids it, and it's not to say that I won't need it in the future. I have one inoperable tumour in an unfortunate place, it is stable for now and I hope it remains that way. Surgery is, to me, something that gets planned into the schedule like an everyday occurrence. It can't be helped, there is no cure. Several of my tumours are what is called Plexiform Tumour. They cannot be completely removed, and the aim of surgery is to reduce their size, making life slightly more bearable. To date I have had 12 operations, 5 of which to debulk the large tumour on my face, 2 to repair a broken arm and the rest to remove about 20 other tumours around my body. During one of these operations my blood pressure and oxygen levels dropped dangerously low and I almost died. In 2017 I had a cancer scare and had to give permission to have my leg amputated if it was deemed necessary, fortunately the tumour was not cancerous, and they managed to remove the tumour entirely, saving my leg.
Like many people with NF1 I have a range of other conditions including ADHD, Dyslexia, Dyspraxia and Irlen’s Syndrome (I actually have about 13 diagnosed conditions and under investigation for a few more). These have impacted other people’s opinions on what I am capable of. I spent most of my life being told what I cannot do and what I will not achieve, I was told I would not have a normal life, I would not achieve academically, I would not go to university or live independently and people should not expect too much from me. I live every day in constant pain and take daily medication to try and control it, just so I can function!
After being told at secondary school I just was not academic and should not have such high expectations I went to college for two years to complete a Level 3 Extended Diploma in Medical Science. The support at college was fantastic and my confidence quickly improved. I received a triple Distinction* after obtaining 100% throughout my course.
In 2017 I started university and received tremendous support from my tutors and funded support from DSA, for the first time in my life I have not had to prove myself to anyone. Staff can see what I am capable of and I am on target to achieve a first- and will even graduate during a global pandemic.
I am a Senior Student Ambassador and I have had various leadership opportunities as part of this role including providing training sessions to my academics on how to use the lecture capture software Panopto, to leading a team of ambassadors at graduation ceremonies. I am a STAART (Support Through AccessAbility Retention and Transition) ambassador and I work hard to support prospective and current students who have a disability, long-term health condition, specific learning difficulty, and/or mental health condition. I have run events, given presentations, spoken to hundreds of people, and promoted STAART at various events throughout the country and abroad.
Despite how difficult growing up disabled has been I have used my experience as a source of motivation in my academic and personal life. I have travelled half the world by myself.
I have worked in a hospital in Tanzania

I have climbed Kilimanjaro

I jumped out of a plane, raised thousands of pounds for charity, I won a Diana courageous citizen award, I have been on TV, live on the radio and in the newspaper. In September 2019 I attended the global Neurofibromatosis conference in San Francisco, where I had the opportunity to meet many of the leading NF researchers.
I do not think I would have achieved as much I have done without having faced the challenges in my daily life. I have had to break down barriers for myself and prove just how much I can do and what I can achieve. I have always liked to prove people wrong and achieve more than they believe I can.
This is my Life with Neurofibromatosis, summed up in 3 minutes. There have been many tears, much heart ache, many challenges to overcome but I have never let this stop me!
Filter News

New ways to treat NF1 tumours with existing drugs
Researchers at the Living Systems Institute, University of Exeter, UK are researching new ways to treat NF1 tumours
Read More
Easter Message
A message from Karen, our Charity Director, wishing you a very Happy Easter!
Read More
Equality, Diversity and Inclusion in the Workplace
Nerve Tumours are here to support you in the workplace: iNForm; workplace equality research & creating an inclusive workplace
Read More
Wayne’s World of Marathons
Read about Wayne's world: marathons, running a wedding fayre business with wife Leanne and their son Harley who has NF1
Read More
Team NTUK London Marathon 2023
Meet some of our runners and read their inspiring marathon motivation stories
Read More
Pip’s London Marathon
Pip describes life with NF1 & limited vision and his motivation to run the London Marathon
Read More_370x280_800_600_s_c1.jpg)
The Scottish Parliament Rare Disease Day Online Reception 15/03/2023
NTUK attended the Scottish Parliament Rare Disease Day online reception
Read More
Support Derry’s and Dan’s Marathon Run for NTUK
Dan and Derry will be taking on the London Marathon in support of Nerve Tumours UK
Read More
Ragbir’s London Marathon
Ragbir is the Paediatric Lead for NF1 in Leeds and is running the London Marathon
Read More