Man lives in agony with rare disorder that makes his skin peel off at the slightest touch
By 20, Dean was so crippled by his debilitating skin condition that he was wheelchair-bound
SOME of us can't leave the house unless we've spent the best part of an hour doing our hair and makeup.
But for 38-year-old Dean, his lengthy morning routine can take upwards of four hours - and it's a matter of life and death.
Dean, from Australia, lives with epidermolysis bullosa (EB), a condition which has left his skin so fragile that even a light touch can make it blister and peel.
Because his skin won't heal, he's always at risk from fatal infections.
Most kids with Dean's condition die very young from disease and infection, with half passing away before they're two-years-old.
When Dean was born, his parents had no idea anything was wrong.
"12 hours after being born, he started to get a few blisters but it was about three days before the concerns started coming," says Jenny, Dean's mum.
"These blisters kept coming and kept getting bigger and bigger. He was put in isolation."
At six days old, Dean was rushed to hospital in Brisbane to assess what was going wrong.
Dean's symptoms were so unusual that they couldn't explain them and it took months to get a diagnosis.
Jenny recalled: "His teen years were heartbreaking because that's when kids build some strong friendships with their own peers and he really didn't get many strong friendships.
"He lost nearly all the skin off his back. He really didn't want to be alive."
What is epidermolysis bullosa?
EB is the name for a group of rare, genetic skin disorders that cause the skin to become super fragile.
Any kind of trauma or friction can result in painful blisters.
The NHS says that symptoms can include:
- skin that blisters easily
- blisters inside the mouth
- blisters on the hands and soles of the feet
- scarred skin, sometimes with small white spots called milia
- thickened skin and nails
In some cases, it's possible to test an unborn baby for EB at about 11 weeks into pregnancy.
This may be offered if you or your partner are known to be a carrier of the faulty gene associated with EB and there's a risk of having a child with a severe type of EB.
There is no cure; the only thing you can really do is try to avoid infections occurring.
Dean had a choice: give up or try to live life on his own terms.
So at just 13, after years of operations, Dean decided to stop fighting his condition and start living his life - regardless of what that meant for his lifespan.
By the time he was 20, Dean had so much scar tissue on his legs and feet that he could barely walk and he found himself wheelchair-bound.
But Dean was given another shot at life from an unexpected source - the Syndey 2000 Olympics.
Dean was selected as one of the torchbearers to carry the Olympic torch.
He wanted to try to get physically strong enough to walk the required 650m with the torch; he hadn't walked that far for about 15 years.
Dean was given a treadmill and it was just a matter of putting one foot ahead of the other.
When the time came round, he successfully managed to walk the distance - which was a huge achievement.
For now, he's happy to defy the odds for as long as he can - with as little medical intervention as possible.
"I've got my life under control and I'm living my life to a really high degree.
"My skin is never going to stop me from achieving the things I want to achieve or doing the things that I want to achieve in my life."
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For the first time, Dean and his parents are able to plan for the future, with dad Peter saying that they now believe he'll outlive them.
Without his condition, Dean says that he couldn't be the man he is today.
"I think the EB and the limitations that I had growing up have given me the fire and determination to achieve everything I want to achieve today, and then some."
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