- Lizzie, who suffers from a rare genetic disorder XP, can’t go outside unless she’s covered head-to-toe
- The disorder means she is sensitive to sunlight
- The brave fighter has had skin cancer 50 times, but she won’t let it break her
Here Lizzie Tenney, 30 tells her own story in her own words.
Slapping on sunscreen all over, I made sure not to miss a spot. Even with my black jeans on, I still rubbed the thick cream in and around my ankles.
‘Here you go, love,’ my mum, Kittie, said, passing me my protective gloves.
It was still not enough to shield me from the sun’s harsh UV rays, so my dad, Steve helped me shrug on my black leather jacket.
Then it was time for my final accessory – a special bucket hat with a long plastic sheet that came down nearly to my elbows.
‘Good as gold,’ I smiled, finally able to walk out into my front garden – with an ultraviolet meter in my hand, which measured the harmful rays outside.
While most people just throw on a hat and sunnies, my sun safety protocol might seem extreme.
But these things keep me extra safe – and even save my life.
Aged 12, I was diagnosed with xeroderma pigmentosum (XP) – a rare genetic disorder causing severe sensitivity to sunlight. Only one in 250,000 worldwide were affected by the condition.
Even brief exposure leaves me freckled, blistered and burned. And scarily, because my skin is unable to repair its own DNA once it’s been damaged, I’m much more susceptible to developing skin cancers at a super rapid pace.
‘Only one in 250,000 worldwide were affected by the condition’
Mum and Dad first noticed something was different about me when I was six weeks old.
After about 30 minutes in the park, mostly in the shade and wearing a hat, the next morning my tiny face was burned red raw and my eyes were swollen shut.
‘She must’ve just got a little too much sun,’ the GP told my worried parents.
Mum and Dad were baffled, but believed I had extra sensitive skin and made sure to lather me in sunscreen and dress me in protective clothing.
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Growing up, I was so jealous of my older siblings, Jason, twins Brad and Chris, Josh, Joseph, Katie, and Stephanie, when they played outside in shorts and singlets.
But sometimes I even got sunburned sitting close to a window inside the house. And, terrifyingly, despite seeing countless doctors, no-one knew why.
When I was 12, in 2007, I developed a sore on my cheek. Scarily, several months later it was still there, so my parents drove me to a new dermatologist.
‘That’s cancer,’ said the specialist, spying the particularly nasty blister, which was the size of a large coin.
‘ Sometimes I even got sunburned sitting close to a window inside the house’
My heart dropped into my stomach.
But there was more…
‘I believe Lizzie has xeroderma pigmentosum,’ she said, explaining that while it was rare, she was one of the few experts in the world specialising in the condition.
Genetic testing confirmed that I had XP, and that my parents both carried the gene mutation.
Further investigations revealed the skin cancer was a basal cell carcinoma.
Caught just in time, it was surgically removed. The cancer was so deep, I was left with a scar, but I was just happy to be alive.
‘We’ll get through this,’ Dad said, wrapping me in a cuddle.
After that, I began wearing my new special hat and other gear to protect me from the sun.
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Mum also found a special dye-wash to ensure my long layers were UV-protected, and we kept our curtains drawn during the day.
Buying an ultraviolet meter, I didn’t go anywhere without it.
Although my new get-up was uncomfortable at first, I knew it was saving my life.
And despite the stares from strangers and questions such as, ‘Are you a bee keeper?’ or ‘Are you an astronaut?’, I tried to remain positive.
‘You’re such a brave girl,’ Mum smiled.
I joined support groups for XP on social media and made so many wonderful friends who understood exactly what I was going through.
When I was 15, a new relative was born.
‘So sweet!’ I cooed, in awe of the adorable newborn.
‘we kept our curtains drawn during the day.’
But sadly, it soon became clear that they also seemed to be allergic to the sun, getting nasty burns after even brief stints outside.
Aged one, they were also diagnosed with XP.
I felt sad knowing it would make their life more difficult, but also fortunate that we already knew how to support them.
My tiny relative looked so cute toddling about in their mini protective hood.
‘We’re like twins!’ they’d giggle to me as they got older.
Now 30, despite my protective wear, I’ve had 50 skin cancers removed.
The last was in October 2025 after a burn I’d suffered on a family holiday to the beach.
To stay safe, I get a skin check every six months.
‘My tiny relative looked so cute toddling about in their mini protective hood.’
Along with basal cell, I’ve also had squamous cell carcinomas. I thank God I’ve never had melanoma.
But I don’t let fear stop me from living my life to the fullest. I love snorkelling, swimming, paddleboarding, canoeing and going on theme park rides – always fully covered up, of course.
Living at home with my parents, I always feel so loved.
I used to get down about people’s curious comments, but now I use any opportunity I can to raise awareness of XP.
And when strangers stare, I’ll stop and explain exactly why I’m wearing my get-up.
Although I have to wear a costume for life, I am so grateful for the important things – laughter, friends, and family.
My motto is to rise above it all.
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