01 February 2019
Megan Crews is a 30 year-old special needs tutor in Salisbury. She recently spoke out in The Sun about the prejudice people with NF face, and about being open and unembarrassed about her NF1. Here she tells more of her story:
What is your outlook on life?
" I refuse to let it win and I will, for as long as I can, skip through life with it hand in hand, pushing myself to live the life I want; be it in discovering and experiencing new parts of the world, furthering my career or sharing love"
Could you tell us a bit about yourself?
I’ve never known a life without Neurofibromatosis. I’ve always tried to live my life with it rather than in it, never allowing it to stop me living the life I want. At 15 years old I moved to France with my parents; learning the language whilst studying at a local French school and gaining some of the most loving, supportive and understanding friends anyone could ask for. Through a conversation with a friend at Exeter College in Devon, I heard about an opportunity to move to Beijing, China for a job working as a Teaching Assistant at The British School of Beijing. I couldn’t let this pass me by and Beijing then became my wonderful, exciting and eye-opening home for 7 years.
For the past 3 years I’ve been working full time in a Special Needs School for children and young adults in Salisbury, U.K. During that time, I’ve had multiple consultant’s appointments, MRI scans and other investigations. These have shown that I have 3 to 4 tumours on each side of the nerve root foramens on each vertebra down the whole length of my spine, with some beginning to push into my spinal column. They have also discovered growths on my lungs and osteoporosis in my hips. Having been advised that nothing can be done for any of these issues I’ve decided that once again it’s time to go on new adventures and I’m off to explore Australia to see where that takes me!
Does anyone else in your family have NF?
No, I’m a spontaneous mutation. I’ve made the decision not to have children due to the risk of passing on NF, or causing myself harm during birth or pregnancy that wouldn’t allow me to be the mother I wish to be. Adoption or fostering is high on my agenda and I hope to find a partner who is supportive and understanding enough to respect my wishes and join me in that adventure.
"Be proud to have NF and don’t be ashamed to show people your lumps, bumps or skin tags. You may get looks, you may be asked questions but use this as an opportunity to tell others of your stories and experiences"
What is most challenging for you with your NF?
I have a very poor bladder, although I can’t fully blame NF for this. I’ve had all of the ‘normal’ investigative tests available, none of which have come out with an answer. I often have accidents when I’m at home, work or going out, all of which are highly embarrassing and upsetting. And of course, the daily pain that I get in my lower back and knee. Some days I can go without really noticing it, whereas others I’m couch bound with a hot water bottle, not being able to move around freely. This has, at times, stopped me from going out with family and friends as I felt that I would bring the mood of the night down if I couldn’t control the pain. I have recently started to take a hot water bottle out with me to restaurants and bars! I have had bad reactions to painkillers. Due to this I now only take Tramadol when I feel it is an absolute necessity – mainly if I have a day of work or travel and have woken up in pain or REALLY want to go out and can’t take my trusty hot botty!
Where do you get support? How important is that to you?
I get the majority of my support from my family and friends, who are all compassionate, understanding, supportive, inclusive and non-judgemental. This allows me to feel I can be open and honest about all that is happening with me as my NF develops and if I am in pain, not have to hide it away. The same goes for the bladder issues which is ‘bladdy’ fantastic and doesn’t make me feel like an outsider.
As well as this I find support a variety of Neurofibromatosis Facebook groups both situated in the U.K and Australia and for some who have become closer friends we now communicate via Messenger. The Nerve Tumours UK website and community hub has also become a strong place of support and to find new information.
All of this social media has allowed me to find comfort in others and hopefully them in me as we support each other; sharing our own experiences, knowledge and understanding, thoughts and ideas and compassion.
What advice would you give other patients and families?
Get the medical advice that you feel is necessary and seek out all the help and support that you can, but don’t let it rule your life.
Be proud to have NF and don’t be ashamed to show people your lumps, bumps or skin tags. You may get looks, you may be asked questions but use this as an opportunity to tell others of your stories and experiences. Education is the key to helping people to gain understanding and compassion towards others, which in turn helps us all to live a life without feeling judged.
What is your outlook on life?
I believe that it is easy to let the pain and anguish of NF get the better of you. But I refuse to let it win and I will, for as long as I can, skip through life with it hand in hand, pushing myself to live the life I want; be it in discovering and experiencing new parts of the world, furthering my career or sharing love, light and laughter with family, friends and fellow humans I meet along the way.
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