I love the skin I’m in
Janu has embraced and celebrated her di erences
Staring into the mirror, I couldn’t help feeling despair at the lumps that had cropped up on my face. I look so ugly, I thought. I’d been diagnosed with neuro bromatosis type 1 (NF1) aged nine, after a scattering of brown spots appeared on my stomach.
It’s a genetic disorder where multiple benign tumours made up of nerves and skin – neuro bromas – develop in and on the body.
There’s currently no cure and it’s progressive.
Growing up, I’d been used to a few bumps.
But now I’d hit my teens, heaps more had appeared and they were even emerging on my face.
As well as NF1 affecting my skin, it also meant I had learning dif culties – plus there was a small risk that the tumours could become cancerous.
It wasn’t until I turned 14, though, that my disorder really felt like a burden.
Tumours started popping up everywhere.
‘I look hideous,’ I’d cry to my mum, Viji.
‘When you’re older, it won’t matter, I promise you,’ she soothed.
But I was a teenage girl and I couldn’t imagine this feeling ever going.
I compared myself to the women on covers of beauty magazines, and I looked nothing like them.
So ashamed of my skin, I covered up in long-sleeved tops and black pants even in the height of summer.
‘Aren’t you hot?’ my friends would ask. ‘Nah, I’m ne,’ I’d lie, sweltering.
If anyone asked me about the lumps and bumps on my skin, I’d tell them it was an allergic reaction.
At school, the other kids would snigger at my appearance.
It was devastating and I felt like an outsider.
The tumours could also be painful.
When I was 15, I had an operation to remove the bigger tumours and the ones causing me pain.
It was a relief to get rid of them, but with hundreds more covering my skin, my con dence was still so low.
One time, when I was at a party, a mate told me a boy was checking me out.
But when another girl overheard, she cruelly swiped, ‘He was probably just staring at your lumps.’
And because of my learning dif culties, my teacher said, ‘Don’t bother applying for university.’
It felt like the world was against me, but I refused to let it stop me working to achieve my dreams.
Getting my head down, I graduated with a diploma before getting a degree in digital media.
I felt so proud of what I’d achieved.
But my tumours still got me down. I endured countless operations to eliminate the worst ones, but I battled depression and anxiety.
In my early 20s,
I decided to tell two friends about my NF diagnosis.
It was the rst time I’d opened up to mates.
I was worried about their reaction, but they were so kind and supportive.
‘It doesn’t change anything,’ they insisted.
It was such a relief. Slowly, I started to realise that people don’t care about what you look like – they
People don’t care about what you look like – they want to connect
want to connect with you on a deeper level.
I started enjoying life and making new friends.
Then, in 2019, I was booked in for an op to remove more than a hundred neuro bromas from my head, neck and shoulders that were painful.
It meant I had to cut off my hair for the procedure.
Initially, the thought of losing my locks was tough, but then I had an idea.
‘I’m going to turn a negative into a positive and shave my hair for charity,’ I told Mum.
‘That’s a brilliant idea,’ she grinned.
The charity I chose was the Children’s Tumour Foundation – who support those impacted by NF.
All this time, I had kept my NF1 a secret from so many, but I decided to tell the world when I started asking for donations.
Sharing the fundraising page on social media, which included details about my own NF1 journey, I felt a utter of nerves.
But the responses were wonderful.
Why didn’t you tell me this sooner, I could have been there for you, one friend messaged.
Everyone was so kind and supportive, it felt like a huge weight had been lifted from my shoulders.
My initial fundraising goal was $3000, so I was astounded when I reached that in just a few days.
In the end, I raised $16,000!
During the surgery, 162 tumours were removed, which helped with the pain.
I became an NF ambassador for the
Children’s Tumour Foundation, which involves speaking at events and mentoring young adults living with NF.
It feels very empowering to help others.
In fact, I now feel so empowered, I’m taking part in the Children’s Tumour Foundation annual Cupid’s Undie Run, where, as well as other cheeky challenges, people take off their pants for the charity to raise money and awareness.
Due to the pandemic, the two-week event is going virtual this year.
I want everyone to experience the joy and happiness that I’ve found.
For those who are struggling like I did, I urge you to open up and talk to loved ones, surround yourself with good people and believe in yourself.
I also encourage others to be kind to those with a difference.
I’ve learned that pain in life is inevitable, but suffering is optional.
It’s taken me nearly three decades, but I nally love the skin that I’m in.
My differences are what make me beautiful. ●
To take part in Cupid’s Undie Run, register before February 14 at cupidsundierun.com.au