Man lives with 'worst disease you've never heard of' that makes skin 'fragile as tissue'

Imagine if your skin was as weak, or more realistically flimsy, as toilet paper.

Well, you'd be imagining what it is like to be Dean Clifford, from Queensland, Australia, who was diagnosed Epidermolysis Bullosa - a rare skin condition that is has been described as one of the worst diseases imaginable.

When he was just 18 months old, doctors informed his parents that he had just two years to live, and if he outlived that he wouldn't survive past the age of five.

Dean Clifford has become an inspiration since defying doctors who gave him two years to live when he was just 18 months old. (Instagram/itsdeanclifford)

Clifford is now 44 years old and is the oldest survivor in the world with the most severe form of Epidermolysis Bullosa - which affects one in 50,000 people.

But despite defying all odds, he still lives in chronic pain and his daily routine involves bandaging up his paper-thin skin.

Speaking to MailOnline about his condition and how it has affected his life, he said: "The way I describe it to people I meet is my skin is basically as strong as tissue paper or strong as butterfly wings.

"So the slightest little movement will create a blister or a tear in my skin that will become ulcerated and become a nightmare to deal with.

"It’s sort of equivalent to living with third degree burns every single day."

Clifford continued: "I always knew that I was very different. I knew by people in the community being scared to be around me, or when I’d go to the cities or go outside of my familiar environment the community would be scared to be around me.

"Kids to this day are still quite scared and concerned, which is fine, I can deal with kids and get them to understand pretty quickly, and I can deal with adults, and get adults to understand pretty quickly.

"If people want to get to know the person behind the skin condition then I’m more than happy to share my story."

Clifford has the most severe form of Epidermolysis Bullosa - a rare skin condition. (Instagram/itsdeanclifford)

Having a debilitating disease it would be easy for Clifford to take it easy and out of harms way, but instead he chooses to push his body to the limit and in the face of adversity, has become a bodybuilder - as well as a motivational speaker.

He said: "There’s nobody that I am aware of that is lifting the kind of weights that I lift… and there’s not many people in the world, whether they’ve got EB or they have got a normal healthy body, that is able to train with me on a level or keep up with me."

Incredibly, with life stacked against him, Clifford has become an inspiration to many around the world, and explained what spurs him on - which in his case is his fitness.

He added: "The message I’m always trying to spread is basically to be true to yourself and find the thing that makes your life special."

What is Epidermolysis Bullosa?

Epidermolysis Bullosa is an umbrella term for a group of rare genetic skin disorders which cause the skin to be very fragile, meaning any kind of trauma to the skin can result in painful blisters. It is caused by a gene mutation.

The symptoms include:

• skin that blisters easily
• blisters on the hands and soles of the feet
• thickened skin that may be scarred or change colour over time
• thickening of the skin and nails

• Warning issued as almost half of people with this specific disease don't even know they have it
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