‘butterfly child’ born with ‘the worst disease you’ve never heard of’ defies expectations 

An inspirational man with an extremely rare genetic skin is defying the odds as he exceeds his life expectancy by 34 years.

Brisbane man Dean Clifford, 39, was born with epidermoidal bullosa (EB) – a condition which causes his skin to fall off by the slightest touch.  

But, despite the challenges he faces, he has transformed himself from a physically weak and sick child to a bodybuilder and motivational speaker.

Mr Clifford, who is the oldest living survivor of the disease in the world, has opened up about what life is like living with the condition, which only affects one in 50,000 people in the world. 

He says the way he describes his skin to people is that ‘it’s as strong as tissue paper or as strong as butterfly wings. 

Brisbane man Dean Clifford (pictured), 39, was born with epidermoidal bullosa (EB)- an extremely rare skin condition which causes sufferers to have extremely fragile skin

But despite all expectations, Mr Clifford, now lifts 2.5 times his body weight and travels around the country inspiring others to live their life to the fullest

But despite all expectations, Mr Clifford, now lifts 2.5 times his body weight and travels around the country inspiring others to live their life to the fullest

Mr Clifford, now lifts 2.5 times his body weight and travels around the country inspiring others to live their life to the fullest.

‘If you bumped into something you might develop a bruise, but if I bump into something the skin just falls off. There is nothing that holds it together,’ he told Daily Mail Australia.

‘I describe it like velcro that doesn’t have any stick left. 

‘Any sort of movement – moving my arm, taking a step – any sort of movement will result in the layers of skin rubbing against each other like sandpaper.’ 

Mr Clifford says his EB- which has been described by some as ‘the worst disease you’ve never heard of’- is ‘difficult to manage on a day-to-day basis.’ 

Now one of the oldest EB sufferers in the world, he says his case was rather ‘unique’, as it took six hours before his skin began to break down and blister. 

Now one of the oldest EB sufferers in the world, he (pictured left)  says his case was rather 'unique', as it took six hours before his skin began to break down and blister

Now one of the oldest EB sufferers in the world, he (pictured left)  says his case was rather ‘unique’, as it took six hours before his skin began to break down and blister

Many children born with EB- sometimes called ‘butterfly children’ because their skin is as fragile as butterfly wings- don’t live for more than a few weeks past birth. 

Because of the strenuous birthing process, many suffer serious injuries simply being born, which can be followed by serious infections. 

‘I’m the only person that I am aware of that had no sign of it from being born. Most of the time it results in skin trauma,’ he said. 

 ‘[But] once my skin began to break down it spread really quickly and aggressively.’ 

With his (pictured) legs and feet worse affected, walking, stepping on a pebble, or even a sharp strand of grass would be enough to cause injury

With his (pictured) legs and feet worse affected, walking, stepping on a pebble, or even a sharp strand of grass would be enough to cause injury

With his legs and feet worse affected, walking, stepping on a pebble, or even a sharp strand of grass would be enough to cause injury.

To protect his limbs, Mr Clifford was wheel chair bound for a decade until he turned 18- circumstances he attributes to building incredible upper body strength.

 But everything changed when a friend suggested he try weight lifting – which only requires short bursts of physical contact- after he had explained it is repetitive motions, such as typing, that he finds difficult. 

‘All through my life I’ve had to be super careful with everything I do. Before I began weight lifting, I was used to being super careful. I had to use two hands to pick up a bottle of milk,’ he said.

‘That first day at the gym I lifted about 60 kilos, which was my body weight at the time, and everyone stood back in confusion and amazement.’ 

Although he must avoid weight exercises that require grip, Mr Clifford (pictured)  can chest press 150kgs

Although he must avoid weight exercises that require grip, Mr Clifford (pictured)  can chest press 150kgs

After pushing beyond his preconceived limits during his first session and becoming addicted, he stopped using his wheel chair against doctors’ advice.

Although he must avoid weight exercises that require grip, Mr Clifford can now chest press a staggering 150kgs.   

While he lives in constant pain- which runs in the background much like a toothache- he says it is all he knows but he will never let it get in the way. 

Now a motivational speaker for 15 years, he is also active with several medical charities, including DEBRA Australia, which provides assistance and advocacy for EB sufferers.

Mr Clifford says he loves going to events and meeting people, to share his story and inspire others.

While he (pictured) lives in constant pain- which runs in the background much like a toothache- he says it is all he knows but he will never let it get in the way

While he (pictured) lives in constant pain- which runs in the background much like a toothache- he says it is all he knows but he will never let it get in the way 

‘It’s important for me to get out in the community and make everyday fun and memorable and try to share my story and if you try very hard you can reach your goals.’ 

‘I’ve been incredibly lucky and I absolutely love getting out to the business, school, charity events that I speak to these days. It’s a lot of fun.’

In five weeks, he will be heading to Las Vegas with family and friends to mark his 40th birthday- which is ten times the amount of years he was predicted to live.   

‘It’s a huge achievement. Most people don’t like to get older, but I am counting down the milestone. 

About a thousand people are believed to have EB in Australia, with around 500,000 sufferers worldwide. 

International EB Awareness Week begins on Friday October 25. 

Now a motivational speaker for 15 years, he (pictured) is also active with several medical charities, including DEBRA Australia, which provides assistance and advocacy for EB sufferers

Now a motivational speaker for 15 years, he (pictured) is also active with several medical charities, including DEBRA Australia, which provides assistance and advocacy for EB sufferers

 

Read more at DailyMail.co.uk