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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!  

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Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

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Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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