Helpline 07939 046 030

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

Filter by Date
Category
Reset

Diana’s 1 Month of Rowing for Neurofibromatosis

Diana is taking on an epic 150k rowing challenge - 5k per day to support her daughter Ellie & our NF community

Read More

The NTUK running team kick starts 2021’s running season in this year’s Asics 10k!

Check out the year's first major running event - see how our NTUK running team got on!

Read More

Alex’s 12 months of Running

Alex has nearly completed his incredible 12 months of running for NTUK, totalling a whopping 80km – see how he got on!

Read More

Ella’s editorial

Have a read of Ella's editorial as she shares her brave journey against NF1 with us!

Read More

Colin’s West Highland Walk for NF

Colin has completed his epic journey across the highlands to raise awareness for our NF community. See how he got on.

Read More

Kian’s NF2 Blog

Kian shares his NF2 journey and his inspirational path - training to swim in the para-olympics

Read More

To Infinity & Beyond!

Cameron takes on an incredible quest for NF - 34 miles running, 34 miles cycling, 34 miles rowing and a 1 mile walk with Roo!

Read More

Runderpants 2021/22 Is Back!

Take part in an event that's absolutely pants! Runderpants is a fun run, in your pants, for our NF community!

Read More

TABI (Teen Appearance and Body Image) - CAR Research Study

Find out how you can take part in the Centre for Appearance Research's study for Young People

Read More