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Real Life

Real life: My whole body is covered in tumours!

I refused to let it stop me from living my life.

By As told to Take 5

Gail Appelgren, 57, shares her true life story;

Strapping on the seat belt, I felt a rush of excitement.
For the first time in ages my hubby, Tim, and I had time off from our jobs as social workers and were flying overseas to the Dominican Republic for a holiday.
The plane had no sooner taken off before a flight attendant approached me, looking apprehensive.
"Excuse me, ma'am, we need to move you," she began.
What?!
I felt her eyes - and all the other passengers' - burning into me.
"Someone's raised concerns about sitting near to you," she continued. "They think you're contagious and are worried about catching whatever it is you have."
Whatever it is you have …
I rolled my eyes.
Me as a child.
"Go and Google neurofibromatosis," I snapped, refusing to budge from my seat.
Tim held my hand for comfort, but this sort of encounter was nothing new for me.
I'd been hearing these sorts of cruel comments for most of my life.
At age 14, I was diagnosed with neurofibromatosis type 1 after tonnes of coffee-coloured spots started spreading all over my body.
The Take 5 team shared the story of Kacie, a 12-year-old with J-cup breasts, and what her mum Clare did to help her. Check it out the Take 5 Ripper Real Life Podcast.
Story continues below.
The hereditary skin condition causes non-cancerous tumours to grow along my nerves, producing bumps on the surface of my skin.
By the time I was 30, I was covered in them from head to toe.
It made me deeply self-conscious and the stares I copped from strangers didn't help.
I desperately wanted them gone, so I had more than 40 surgeries to remove the tumours.
Each time, I felt relieved but before long, my stomach would sink when they started growing back.
Why won't they leave me alone? I wondered.
Aside from the shock, they also caused me great pain.
Just knocking one of my bumps could be agony.
Sometimes it was like a long-lasting tooth ache or a bad headache.
Sadly, most people were far from sympathetic.
Complete strangers called me everything from "wart face" through to "freak" and "witch."
When I went to the local swimming pool, I was asked not to swim there.
In the grocery store, people told me not to touch the fruit.
Me and my incredible husband Tim.
It felt like everywhere I went, I was unwanted.
They treated me like I was dirty and diseased.
I tried my best to get on with life, but it was hard when people were so disgusted of me.
Thankfully, I managed to make a few good friends who introduced me to Tim.
Like me, he also suffered from neurofibromatosis, although his wasn't as severe or noticeable as mine.
"You're so beautiful," he told me after we went out.
I never thought I'd hear another person say those words to me.
But Tim understood exactly what I'd gone through.
When we married four years later, I felt like the luckiest woman in the world.
I wore a wedding dress without any fear of someone staring or pointing at me.
"I love you more than anything," Tim said.
I'm proud to be someone who plays golf with strangers.
Life with him was perfect.
His love and support helped me to realise that it didn't matter what anyone else thought of me.
That's why the flight attendant's words were water off a duck's back to me.
I wasn't going to let her – or anyone else on the plane – ruin our holiday.
I'm proud to wear sleeveless dresses and shirts, and play golf with pure strangers.
And when people ask me questions, I always take the time to speak with them and answer them properly, hoping to teach them not to judge a person by what they look like.
I want people to understand neurofibromatosis as much as possible.
My hope is that by educating people they'll look past my tumours and see the same smiling, happy woman I see.
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